Cicely Saunders Institute: A Sample of Our Recent Research

RECENT RESEARCH A SAMPLE OF PAPERS RECENTLY PUBLISHED BY THE

CICELY SAUNDERS INSTITUTE

RESEARCH ARTICLE

Conceptualization and Development of the Leg Activity Measure (LegA) for Patient and Carer Reported Assessment of Activity in the Paretic Leg Stephen Ashford1,2*, Diana Jackson2, Patrick Mahaffey1, Roxana Vanderstay2 & Lynne Turner-Stokes1,2 1

Regional Hyper-acute Rehabilitation Unit, Northwick Park Hospital, London, UK

2

King’s College London, Faculty of Life Science and Medicine, Department of Palliative Care, Policy and Rehabilitation, London, UK

Abstract Background and Purpose. The purpose of the paper is to develop a patient-reported outcome measure of active and passive function in the paretic lower limb with associated spasticity. Methods. Potential items for inclusion were identified through (1) systematic review and analysis of existing measures and (2) analysis of the primary goals for treatment in a spasticity service. Ethical approval for re-evaluation of routinely collected data was received. Item reduction was achieved through consultation with a purposively selected group of experienced physiotherapists and occupational therapists (n = 16) in a two-round Delphi process. This was followed by a review of Delphi consultation findings by the Project Advisory Group consisting of patients and carers. Results. Development of the leg activity measure (LegA) included two rounds of Delphi consultation, which resulted in a high degree of agreement (80% in round 2) between respondents in rounds 1 and 2. From an initial shortlist of 126 items, 29 items were initially identified for inclusion in LegA and subsequently refined to a 24-item (two sub-scales) tool consisting of nine passive function and 15 active function items. Discussion. The Delphi consultation with clinicians experienced in this area of practice ensured content validity and appropriate reduction of items. In common with previous work in the upper limb, a 5-point ordinal scaling structure was chosen, with ratings based on activity over the preceding 7 days. The LegA is designed to measure passive and active function following focal interventions associated with spasticity in the lower limb. Content and face validity have initially been addressed within the development process. The next phase of development will involve formal evaluation of psychometric properties. Copyright © 2016 John Wiley & Sons, Ltd. Received 25 June 2015; Revised 7 October 2015; Accepted 24 November 2015 Keywords outcome measurement; outcome measures; stroke; traumatic brain injury *Correspondence Stephen Ashford, PhD MSc MCSP, Regional Rehabilitation Unit, Northwick Park Hospital, Watford Road, Harrow, Middlesex HA1 3UJ, UK. E-mail: Stephen.Ashford@nhs.net

Published online 16 February 2016 in Wiley Online Library (wileyonlinelibrary.com) DOI: 10.1002/pri.1660

Implications for Physiotherapy Practice • This study describes the systematic development of the leg activity measure (LegA), the first measure of active and passive function in the paretic lower limb with associated spasticity.

Physiother. Res. Int. 22 (2017) e1660 © 2016 John Wiley & Sons, Ltd.

• The LegA demonstrated face and content validity.

• The LegA is theoretically appropriate for clinical application and is undergoing psychometric testing to demonstrate this.

1 of 13

van Vliet et al. BMC Neurology (2016) 16:63 DOI 10.1186/s12883-016-0583-6

RESEARCH ARTICLE

Open Access

How integrated are neurology and palliative care services? Results of a multicentre mapping exercise Liesbeth M. van Vliet1, Wei Gao1*, Daniel DiFrancesco1, Vincent Crosby2, Andrew Wilcock3, Anthony Byrne4, Ammar Al-Chalabi5, K. Ray Chaudhuri7,8, Catherine Evans1,9, Eli Silber6, Carolyn Young10, Farida Malik11,12, Rachel Quibell13, Irene J. Higginson1* and on behalf of OPTCARE Neuro

Abstract Background: Patients affected by progressive long-term neurological conditions might benefit from specialist palliative care involvement. However, little is known on how neurology and specialist palliative care services interact. This study aimed to map the current level of connections and integration between these services.

Methods: The mapping exercise was conducted in eight centres with neurology and palliative care services in the United Kingdom. The data were provided by the respective neurology and specialist palliative care teams.

Questions focused on: i) catchment and population served; ii) service provision and staffing; iii) integration and relationships.

Results: Centres varied in size of catchment areas (39-5,840 square miles) and population served (142,000-3,500,000).

Neurology and specialist palliative care were often not co-terminus. Service provisions for neurology and specialist palliative care were also varied. For example, neurology services varied in the number and type of provided clinics and palliative care services in the settings they work in. Integration was most developed in Motor Neuron Disease (MND), e.g., joint meetings were often held, followed by Parkinsonism (made up of Parkinson’s Disease (PD), Multiple-System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP), with integration being more developed for MSA and PSP) and least in Multiple Sclerosis (MS), e.g., most sites had no formal links. The number of neurology patients per annum receiving specialist palliative care reflected these differences in integration (range: 9–88 MND, 3–25 Parkinsonism, and 0–5 MS).

Conclusions: This mapping exercise showed heterogeneity in service provision and integration between neurology and specialist palliative care services, which varied not only between sites but also between diseases. This highlights the need and opportunities for improved models of integration, which should be rigorously tested for effectiveness.

Keywords: Neurology, Palliative care, Integrated care, Intervention, Mapping, End of life care, Terminal care, Hospice, Home

* Correspondence: wei.gao@kcl.ac.uk; irene.higginson@kcl.ac.uk 1 Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King’s College London, Bessemer Road, London SE5 9PJ, UK Full list of author information is available at the end of the article © 2016 van Vliet et al. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Open Access

Research

Cost-efficiency of specialist hyperacute in-patient rehabilitation services for medically unstable patients with complex rehabilitation needs: a prospective cohort analysis Lynne Turner-Stokes,1,2 Ganesh Bavikatte,3 Heather Williams,2 Alan Bill,2 Keith Sephton2

To cite: Turner-Stokes L, Bavikatte G, Williams H, et al.

Cost-efficiency of specialist hyperacute in-patient rehabilitation services for medically unstable patients with complex rehabilitation needs: a prospective cohort analysis.

BMJ Open 2016;6:e012112. doi:10.1136/bmjopen-2016012112 ▸ Prepublication history for this paper is available online.

To view these files please visit the journal online (http://dx.doi.org/10.1136/ bmjopen-2016-012112).

Received 31 March 2016 Revised 8 June 2016 Accepted 22 June 2016

1

Department of Palliative Care, Policy and Rehabilitation, Faculty of Life Sciences and Medicine, King’s College London, London, UK 2 Regional/Hyperacute Rehabilitation Unit, Northwick Park Hospital, Harrow, UK 3 The Walton Centre, Liverpool, UK Correspondence to Professor Lynne TurnerStokes; lynne.turner-stokes@ doctors.org.uk

ABSTRACT Objectives: To evaluate functional outcomes, care needs and cost-efficiency of hyperacute (HA) rehabilitation for a cohort of in-patients with complex neurological disability and unstable medical/surgical conditions.

Design: A multicentre cohort analysis of prospectively collected clinical data from the UK Rehabilitation Outcomes Collaborative (UKROC) national clinical database, 2012–2015.

Setting: Two HA specialist rehabilitation services in England, providing different service models for HA rehabilitation.

Participants: All patients admitted to each of the units with an admission rehabilitation complexity M score of ≥3 (N=190; mean age 46 (SD16) years; males:females 63:37%). Diagnoses were acquired brain injury (n=166; 87%), spinal cord injury (n=9; 5%), peripheral neurological conditions (n=9; 5%) and other (n=6; 3%).

Intervention: Specialist in-patient multidisciplinary rehabilitation combined with management and stabilisation of intercurrent medical and surgical problems.

Outcome measures: Rehabilitation complexity and medical acuity: Rehabilitation Complexity Scale— version 13. Dependency and care costs: Northwick Park Dependency Scale/Care Needs Assessment (NPDS/NPCNA). Functional independence: UK Functional Assessment Measure (UK FIM+FAM).

Primary outcomes: (1) reduction in dependency and (2) cost-efficiency, measured as the time taken to offset rehabilitation costs by savings in NPCNAestimated costs of on-going care in the community.

Results: The mean length of stay was 103 (SD66) days. Some differences were observed between the two units, which were in keeping with the different service models. However, both units showed a significant reduction in dependency and acuity between admission and discharge on all measures (Wilcoxon: p<0.001).

For the 180 (95%) patients with complete NPCNA data, the mean episode cost was £77 119 (bootstrapped 95% CI £70 614 to £83 894) and the mean reduction

Strengths and limitations of this study ▪ Hyperacute (HA) rehabilitation is an emerging field about which there is currently very little in the published literature.

▪ This 3-year national consecutive cohort analysis compares two different service models of HA rehabilitation from opposite ends of England.

▪ Prospective routinely collected data are reflective of real clinical practice.

▪ Missing data are inevitable in routine clinical data sets, but the 95% capture is high compared with many such analyses.

▪ The NPCNA estimations of cost savings should be interpreted with some caution, as they differ from techniques applied in traditional health economic studies. However, they offer the advantage of assessing care needs and costs independently of who provides the care, and are thus not biased by individual circumstances, such as the availability of informal carers or local policies in statutory care provision. in ‘weekly care costs’ was £462/week (95% CI 349 to 582). The mean time to offset the cost of rehabilitation was 27.6 months (95% CI 13.2 to 43.8).

Conclusions: Despite its relatively high initial cost, specialist HA rehabilitation can be highly cost-efficient, producing substantial savings in on-going care costs, and relieving pressure in the acute care services.

INTRODUCTION There is a growing body of evidence for the effectiveness of early rehabilitation following acquired brain injury (ABI) and other complex disabilities. There is evidence from the trial-based literature and cohort studies that early rehabilitation can lead to reduced stay in hospital, earlier functional gains and improved rates of home discharge once

Turner-Stokes L, et al. BMJ Open 2016;6:e012112. doi:10.1136/bmjopen-2016-012112

1

Etkind et al. BMC Medicine (2017) 15:102 DOI 10.1186/s12916-017-0860-2

RESEARCH ARTICLE

Open Access

How many people will need palliative care in 2040? Past trends, future projections and implications for services S. N. Etkind1*, A. E. Bone1, B. Gomes1,2, N. Lovell1, C. J. Evans1,3, I. J. Higginson1† and F. E. M. Murtagh1†

Abstract Background: Current estimates suggest that approximately 75% of people approaching the end-of-life may benefit from palliative care. The growing numbers of older people and increasing prevalence of chronic illness in many countries mean that more people may benefit from palliative care in the future, but this has not been quantified.

The present study aims to estimate future population palliative care need in two high-income countries.

Methods: We used mortality statistics for England and Wales from 2006 to 2014. Building on previous diagnosis-based approaches, we calculated age- and sex-specific proportions of deaths from defined chronic progressive illnesses to estimate the prevalence of palliative care need in the population. We calculated annual change over the 9-year period.

Using explicit assumptions about change in disease prevalence over time, and official mortality forecasts, we modelled palliative care need up to 2040. We also undertook separate projections for dementia, cancer and organ failure.

Results: By 2040, annual deaths in England and Wales are projected to rise by 25.4% (from 501,424 in 2014 to 628,659).

If age- and sex-specific proportions with palliative care needs remain the same as in 2014, the number of people requiring palliative care will grow by 25.0% (from 375,398 to 469,305 people/year). However, if the upward trend observed from 2006 to 2014 continues, the increase will be of 42.4% (161,842 more people/year, total 537,240). In addition, disease-specific projections show that dementia (increase from 59,199 to 219,409 deaths/year by 2040) and cancer (increase from 143,638 to 208,636 deaths by 2040) will be the main drivers of increased need.

Conclusions: If recent mortality trends continue, 160,000 more people in England and Wales will need palliative care by 2040. Healthcare systems must now start to adapt to the age-related growth in deaths from chronic illness, by focusing on integration and boosting of palliative care across health and social care disciplines. Countries with similar demographic and disease changes will likely experience comparable rises in need.

Keywords: Mortality, Forecasting, Palliative care, Needs assessment, Health services needs and demand, Chronic disease, Comorbidity

Background Many people approaching the end-of-life could benefit from palliative care, which can be defined as a patientcentred approach to care in advanced disease, focusing on quality of life and relief of symptoms [1–6]. The way in which palliative care is delivered depends on individual patient needs. Palliative care is frequently delivered * Correspondence: simon.etkind@kcl.ac.uk † Equal contributors 1 King’s College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, London, UK Full list of author information is available at the end of the article

by non-specialists, for example, as advance care planning in a primary care setting or symptom management in secondary care. Specialist multidisciplinary palliative care teams deliver care for more complex needs in a variety of settings, including hospitals, hospices and in the community, although they can also provide more straightforward end-of-life care.

More palliative care support is likely to be required for some illnesses and clinical syndromes, such as multimorbidity, chronic progressive illnesses with long disease courses, and diseases with complex symptoms. This is

© The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

713428 research-article2017

PMJ0010.1177/0269216317713428Palliative MedicineHenson et al.

Original Article

What factors influence emergency department visits by patients with cancer at the end of life? Analysis of a 124,030 patient cohort

Palliative Medicine 1­–13 © The Author(s) 2017 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav https://doi.org/10.1177/0269216317713428 DOI: 10.1177/0269216317713428 journals.sagepub.com/home/pmj

Lesley A Henson, Irene J Higginson and Wei Gao; on behalf of BuildCARE

Abstract Background: Emergency department visits towards the end of life by patients with cancer are increasing over time. This is despite evidence of an association with poor patient and caregiver outcomes and most patients preferring home-based care.

Aim: To identify socio-demographic and clinical factors associated with end-of-life emergency department visits and determine the relationship between patients’ prior emergency department use and risk of multiple (⩾2) visits in the last month of life.

Design: Population-based cohort study.

Setting/participants: All adults who died from cancer, in England, between 1 April 2011 and 31 March 2012. Our primary outcome was the adjusted odds ratio for multiple emergency department visits in the last month of life, derived using multivariable logistic regression.

Results: Among 124,030 cancer decedents (52.9% men; mean age: 74.1 years), 30.7% visited the emergency department once in their last month of life and 5.1% visited multiple times. Patients were more likely to visit multiple times if they were men, younger, Asian or Black, of lower socio-economic status, had greater comorbidity, and lung or head and neck cancer. Patients with ⩾4 emergency department visits in the 11 months prior to their last month of life were also more likely to make multiple visits during their last 30 days; this followed a dose–response pattern (p for trend <0.001).

Conclusion: Patients with greater comorbidity, lung or head and neck cancer and a higher number of previous emergency department visits are more likely to visit the emergency department multiple times in the last month of life. Previously reported socio-demographic factors (men, younger age, Black, low socio-economic status) are also confirmed for the first time in a UK population.

Keywords Cancer, end-of-life care, emergency department, Accident & Emergency, palliative care, health behaviour

What is already known about the topic?

•• Emergency department (ED) visits towards the end of life by patients with cancer are increasing over time. This is despite: • An association with poor patient and caregiver outcomes; • The majority of patients preferring home-based care; • Most EDs facing significant financial and capacity constraints.

What this paper adds?

•• This study identifies socio-demographic (male sex, younger age, Asian or Black ethnicity, lower socio-economic status) and clinical factors (greater comorbidity, and diagnosis of lung or head and neck cancer) associated with an increased odds of multiple (⩾2) ED visits by patients with cancer in the last month of life.

Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, Faculty of Life Sciences and Medicine, King’s College London, London, UK

Corresponding author: Lesley A Henson, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, Faculty of Life Sciences and Medicine, King’s College London, Bessemer Road, London SE5 9PJ, UK. Email: lesley.henson@kcl.ac.uk

Age and Ageing 2017; 46: 300–309 © The Author 2016. Published by Oxford University Press on behalf of the British Geriatrics Society. doi: 10.1093/ageing/afw193 All rights reserved. For Permissions, please email: journals.permissions@oup.com Published electronically 3 November 2016

How empowering is hospital care for older people with advanced disease? Barriers and facilitators from a cross-national ethnography in England, Ireland and the USA LUCY ELLEN SELMAN1,2, BARBARA A. DAVESON1, MELINDA SMITH1, BRIDGET JOHNSTON3, KAREN RYAN4, R. SEAN MORRISON5, CATY PANNELL1, REGINA MCQUILLAN6, SUZANNE DE WOLF-LINDER1, STEVEN Z. PANTILAT7, LARA KLASS1, DIANE MEIER5, CHARLES NORMAND3, IRENE J. HIGGINSON1 1

Department of Palliative Care, Policy and Rehabilitation, King’s College London, Cicely Saunders Institute, London SE5 9PJ, UK Bristol Randomised Controlled Trials Collaboration, School of Social and Community Medicine, University of Bristol, Bristol BS8 2PS, UK 3 Centre of Health Policy and Management School of Medicine, Trinity College, University of Dublin, Dublin, Ireland 4 Mater Misericordiae University Hospital, Dublin, Ireland 5 Brookdale Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA 6 Beaumont Hospital, Dublin, Ireland 7 School of Medicine, University of California San Francisco, San Francisco, CA, USA 2

Address correspondence to: L. E. Selman. Tel: +44 207 848 5566; Fax +44 207 848 5517. Email: lucy.selman@kcl.ac.uk

Abstract Background: patient empowerment, through which patients become self-determining agents with some control over their health and healthcare, is a common theme across health policies globally. Most care for older people is in the acute setting, but there is little evidence to inform the delivery of empowering hospital care.

Objective: we aimed to explore challenges to and facilitators of empowerment among older people with advanced disease in hospital, and the impact of palliative care.

Methods: we conducted an ethnography in six hospitals in England, Ireland and the USA. The ethnography involved: interviews with patients aged ≥65, informal caregivers, specialist palliative care (SPC) staff and other clinicians who cared for older adults with advanced disease, and fieldwork. Data were analysed using directed thematic analysis.

Results: analysis of 91 interviews and 340 h of observational data revealed substantial challenges to empowerment: poor communication and information provision, combined with routinised and fragmented inpatient care, restricted patients’ self-efficacy, self-management, choice and decision-making. Information and knowledge were often necessary for empowerment, but not sufficient: empowerment depended on patient-centredness being enacted at an organisational and staff level.

SPC facilitated empowerment by prioritising patient-centred care, tailored communication and information provision, and the support of other clinicians.

Conclusions: empowering older people in the acute setting requires changes throughout the health system. Facilitators of empowerment include excellent staff–patient communication, patient-centred, relational care, an organisational focus on patient experience rather than throughput, and appropriate access to SPC. Findings have relevance for many high- and middle-income countries with a growing population of older patients with advanced disease.

Keywords: empowerment, inpatients, hospitals, aged, palliative care, older people

300

608348 research-article2015

PMJ0010.1177/0269216315608348Palliative MedicineSchildmann et al.

Original Article

Discovering the hidden benefits of cognitive interviewing in two languages: The first phase of a validation study of the Integrated Palliative care Outcome Scale

Palliative Medicine 2016, Vol. 30(6) 599­–610 © The Author(s) 2015

Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216315608348 pmj.sagepub.com

Eva K Schildmann1, E Iris Groeneveld2, Johannes Denzel1, Alice Brown2, Florian Bernhardt1, Katharine Bailey2, Ping Guo2, Christina Ramsenthaler2, Natasha Lovell2, Irene J Higginson2, Claudia Bausewein1 and Fliss EM Murtagh2

Abstract Background: The Integrated Palliative care Outcome Scale is a newly developed advancement of the Palliative care Outcome Scale.

It assesses patient-reported symptoms and other concerns. Cognitive interviewing is recommended for questionnaire refinement but not adopted widely in palliative care research.

Aim: To explore German- and English-speaking patients’ views on the Integrated Palliative care Outcome Scale with a focus on comprehensibility and acceptability, and subsequently refine the questionnaire.

Methods: Bi-national (United Kingdom/Germany) cognitive interview study using ‘think aloud’ and verbal probing techniques.

Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis and pre-defined categories. Results from both countries were collated and discussed. The Integrated Palliative care Outcome Scale was then refined by consensus.

Setting/participants: Purposely sampled patients from four palliative care teams in palliative care units, general hospital wards and in the community.

Results: A total of 15 German and 10 UK interviews were conducted. Overall, comprehension and acceptability of the Integrated Palliative care Outcome Scale were good. Identified difficulties comprised the following: (1) comprehension problems with specific terms (e.g. ‘mouth problems’) and length of answer options; (2) judgement difficulties, for example, due to the 3-day recall for questions; and (3) layout problems. Combining the results from both countries (e.g. regarding ‘felt good about yourself’) and discussing them from both languages’ perspectives resulted in wider consideration of the items’ meaning, enabling more detailed refinement.

Conclusion: Cognitive interviewing proved valuable to increase face and content validity of the questionnaire. The concurrent approach in two languages – to our knowledge the first such approach in palliative care – benefited the refinement. Psychometric validation of the refined Integrated Palliative care Outcome Scale is now underway.

Keywords Patient-reported outcome measures, outcome measurement, cognitive interviewing, palliative care

What is already known about the topic?

•• Outcome measures need to be specifically developed in palliative care populations to reflect the concerns of advanced illness and ensure minimal respondent burden.

•• The Palliative care Outcome Scale (POS) and Palliative care Outcome Scale–symptom module (POS-S) are brief, valid and reliable questionnaires developed for this population.

•• However, there is some overlap, and patient and clinician feedback indicates scope for further refinement.

•• Cognitive interviewing is recommended for questionnaire development but not adopted widely in palliative care research.

1 Department

of Palliative Medicine, Munich University Hospital, Munich, Germany 2 Department of Palliative Care, Policy & Rehabilitation, Cicely Saunders Institute, King’s College London, London, UK

Corresponding author: Eva K Schildmann, Department of Palliative Medicine, Munich University Hospital, Marchioninistr. 15, 81377 Munich, Germany.

Email: Eva.schildmann@med.uni-muenchen.de

van Vliet et al. BMC Neurology (2016) 16:63 DOI 10.1186/s12883-016-0583-6

RESEARCH ARTICLE

Open Access

How integrated are neurology and palliative care services? Results of a multicentre mapping exercise Liesbeth M. van Vliet1, Wei Gao1*, Daniel DiFrancesco1, Vincent Crosby2, Andrew Wilcock3, Anthony Byrne4, Ammar Al-Chalabi5, K. Ray Chaudhuri7,8, Catherine Evans1,9, Eli Silber6, Carolyn Young10, Farida Malik11,12, Rachel Quibell13, Irene J. Higginson1* and on behalf of OPTCARE Neuro

Abstract Background: Patients affected by progressive long-term neurological conditions might benefit from specialist palliative care involvement. However, little is known on how neurology and specialist palliative care services interact. This study aimed to map the current level of connections and integration between these services.

Methods: The mapping exercise was conducted in eight centres with neurology and palliative care services in the United Kingdom. The data were provided by the respective neurology and specialist palliative care teams.

Questions focused on: i) catchment and population served; ii) service provision and staffing; iii) integration and relationships.

Results: Centres varied in size of catchment areas (39-5,840 square miles) and population served (142,000-3,500,000).

Neurology and specialist palliative care were often not co-terminus. Service provisions for neurology and specialist palliative care were also varied. For example, neurology services varied in the number and type of provided clinics and palliative care services in the settings they work in. Integration was most developed in Motor Neuron Disease (MND), e.g., joint meetings were often held, followed by Parkinsonism (made up of Parkinson’s Disease (PD), Multiple-System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP), with integration being more developed for MSA and PSP) and least in Multiple Sclerosis (MS), e.g., most sites had no formal links. The number of neurology patients per annum receiving specialist palliative care reflected these differences in integration (range: 9–88 MND, 3–25 Parkinsonism, and 0–5 MS).

Conclusions: This mapping exercise showed heterogeneity in service provision and integration between neurology and specialist palliative care services, which varied not only between sites but also between diseases. This highlights the need and opportunities for improved models of integration, which should be rigorously tested for effectiveness.

Keywords: Neurology, Palliative care, Integrated care, Intervention, Mapping, End of life care, Terminal care, Hospice, Home

* Correspondence: wei.gao@kcl.ac.uk; irene.higginson@kcl.ac.uk 1 Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King’s College London, Bessemer Road, London SE5 9PJ, UK Full list of author information is available at the end of the article © 2016 van Vliet et al. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Ramsenthaler et al. BMC Cancer (2016) 16:427 DOI 10.1186/s12885-016-2410-2

RESEARCH ARTICLE

Open Access

The impact of disease-related symptoms and palliative care concerns on healthrelated quality of life in multiple myeloma: a multi-centre study Christina Ramsenthaler1*, Thomas R. Osborne1, Wei Gao1, Richard J. Siegert1,2, Polly M. Edmonds3, Stephen A. Schey4 and Irene J. Higginson1

Abstract Background: Multiple myeloma, the second most common haematological cancer, remains incurable. Its incidence is rising due to population ageing. Despite the impact of the disease and its treatment, not much is known on who is most in need of supportive and palliative care.

This study aimed to (a) assess symptom severity, palliative care concerns and health-related quality of life (HRQOL) in patients with multiple myeloma, and (b) to determine which factors are associated with a lower quality of life.

We further wanted to know (c) whether general symptom level has a stronger influence on HRQOL than disease characteristics.

Methods: This multi-centre cross-sectional study sampled two cohorts of patients with multiple myeloma from 18 haematological cancer centres in the UK. The Myeloma Patient Outcome Scale (MyPOS) was used to measure symptoms and concerns. Measures of quality of life included the EORTC QLQ-C30, its myeloma module and the EuroQoL EQ-5D. Data were collected on socio-demographic, disease and treatment characteristics and phase of illness. Point prevalence of symptoms and concerns was determined. Multiple regression models quantified relationships between independent factors and the MyPOS, EORTC global quality of life item and EQ5D Index.

Results: Five-hundred-fifty-seven patients, on average 3.5 years (SD: 3.4) post-diagnosis, were recruited. 18.2 % had newly diagnosed disease, 47.9 % were in a treatment-free interval and 32.7 % had relapsed/progressive disease phase. Patients reported a mean of 7.2 symptoms (SD: 3.3) out of 15 potential symptoms. The most common symptoms were pain (72 %), fatigue (88 %) and breathlessness (61 %). Those with relapsed/progressive disease reported the highest mean number of symptoms and the highest overall palliative care concerns (F = 9.56, p < 0.001). Factors associated with high palliative care concerns were a general high symptom level, presence of pain, anxiety, low physical function, younger age, and being in the advanced stages of disease.

Conclusion: Patients with multiple myeloma have a high symptom burden and low HRQOL, in the advanced and the earlier stages of disease. Identification of patients in need of supportive care should focus on assessing patient-reported outcomes such as symptoms and functioning regularly in clinical practice, complementary to traditional biomedical markers.

Keywords: Multiple myeloma, Health-related quality of life, Palliative Care Outcome Scale, Symptom burden, Quality of life, Palliative care

* Correspondence: christina.ramsenthaler@kcl.ac.uk 1 Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, Kingâ&#x20AC;&#x2122;s College London, School of Medicine, Bessemer Road, London SE5 9PJ, UK Full list of author information is available at the end of the article Š 2016 The Author(s). Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Chronic obstructive pulmonary disease

ORIGINAL ARTICLE

Physical frailty and pulmonary rehabilitation in COPD: a prospective cohort study Matthew Maddocks,1 Samantha S C Kon,2,3 Jane L Canavan,2,4 Sarah E Jones,2,4 Claire M Nolan,2,4 Alex Labey,2,4 Michael I Polkey,2 William D-C Man2,4 ▸ Additional material is published online only. To view please visit the journal online (http://dx.doi.org/10.1136/ thoraxjnl-2016-208460).

1

King’s College London, Cicely Saunders Institute, London, UK 2 NIHR Respiratory Biomedical Research Unit, Royal Brompton & Harefield NHS Foundation Trust and Imperial College, London, UK 3 The Hillingdon Hospital NHS Foundation Trust, Middlesex, UK 4 Harefield Pulmonary Rehabilitation Unit, Harefield Hospital, Middlesex, UK Correspondence to: Dr Matthew Maddocks, King’s College London, Cicely Saunders Institute, London SE5 9PJ, UK; matthew.maddocks@kcl.ac.uk Received 8 February 2016 Revised 27 April 2016 Accepted 6 May 2016 Published Online First 13 June 2016

ABSTRACT Background Frailty is an important clinical syndrome that is consistently associated with adverse outcomes in older people. The relevance of frailty to chronic respiratory disease and its management is unknown.

Objectives To determine the prevalence of frailty among patients with stable COPD and examine whether frailty affects completion and outcomes of pulmonary rehabilitation.

Methods 816 outpatients with COPD (mean (SD) age 70 (10) years, FEV1% predicted 48.9 (21.0)) were recruited between November 2011 and January 2015.

Frailty was assessed using the Fried criteria (weight loss, exhaustion, low physical activity, slowness and weakness) before and after pulmonary rehabilitation.

Predictors of programme non-completion were identified using multivariate logistic regression, and outcomes were compared using analysis of covariance, adjusting for age and sex.

Results 209/816 patients (25.6%, 95% CI 22.7 to 28.7) were frail. Prevalence of frailty increased with age, Global Initiative for Chronic Obstructive Lung Disease (GOLD) stage, Medical Research Council (MRC) score and age-adjusted comorbidity burden (all p≤0.01).

Patients who were frail had double the odds of programme non-completion (adjusted OR 2.20, 95% CI 1.39 to 3.46, p=0.001), often due to exacerbation and/ or hospital admission. However, rehabilitation outcomes favoured frail completers, with consistently better responses in MRC score, exercise performance, physical activity level and health status (all p<0.001). After rehabilitation, 71/115 (61.3%) previously frail patients no longer met case criteria for frailty.

Conclusions Frailty affects one in four patients with COPD referred for pulmonary rehabilitation and is an independent predictor of programme non-completion.

However, patients who are frail respond favourably to rehabilitation and their frailty can be reversed in the short term.

INTRODUCTION

To cite: Maddocks M, Kon SSC, Canavan JL, et al.

Thorax 2016;71:988–995.

988

Frailty describes a clinical syndrome characterised by multisystem decline that leads to reduced functional reserve and increased vulnerability to dependency or mortality following minor stressor events.1 It affects an estimated 1 in every 10 people aged over 65 years2 and is consistently associated with increased risk of falls, disability, hospitalisation and death.3 Although frailty is conventionally considered secondary to age-related decline, chronic disease(s) can accelerate the rate of decline and

Key questions What is the key question?

▸ What is the prevalence of frailty in stable COPD, and does frailty affect the completion and outcomes of pulmonary rehabilitation?

What is the bottom line? ▸ Frailty affects one in every four patients with COPD entering pulmonary rehabilitation, is associated with favourable outcomes, but is also strong risk factor for non-completion.

Why read on?

▸ This is the first characterisation of the frailty phenotype in stable COPD and demonstrates that physical frailty is amenable to treatment with pulmonary rehabilitation.

precipitate a frail state. In COPD, extrapulmonary manifestations include physical inactivity, muscle weakness, anorexia, osteoporosis and fatigue.4 Each of these systemic impacts of the disease is frequently observed in physical frailty.

The relevance of frailty to chronic respiratory disease has not been fully dissected. In retrospective cohort studies, self-reported frailty is more common in older people with COPD than without it, and markers of frailty have identified those at increased risk of subsequent hospital admission or death.5 6 Few studies have examined the prevalence of frailty in respiratory disease using validated definitions. One notable exception is a report restricted to lung transplant candidates, among whom frailty was associated with increased risk of delisting or death.7 Identifying frailty earlier in the course of disease is important, as interventions may then be introduced to prevent functional decline, hospital admissions and/or death in those at high risk.

Frailty may prove a valuable way of stratifying patients with COPD for future management as it accounts for multiple deficits that influence disease prognosis, for example, muscle weakness or physical inactivity,8 including deficits not considered by other syndromes or comorbidity indices.9 10 Another important but unstudied topic is the interplay between frailty and pulmonary rehabilitation. Pulmonary rehabilitation is highly effective at improving symptom burden, physical function and

Maddocks M, et al. Thorax 2016;71:988–995. doi:10.1136/thoraxjnl-2016-208460

RESEARCH ARTICLE

Psychometric Properties of a Generic, Patient-Centred Palliative Care Outcome Measure of Symptom Burden for People with Progressive Long Term Neurological Conditions a11111

OPEN ACCESS Citation: Gao W, Crosby V, Wilcock A, Burman R, Silber E, Hepgul N, et al. (2016) Psychometric Properties of a Generic, Patient-Centred Palliative Care Outcome Measure of Symptom Burden for People with Progressive Long Term Neurological Conditions. PLoS ONE 11(10): e0165379. doi:10.1371/journal.pone.0165379 Editor: Jerson Laks, Universidade Federal do Rio de Janeiro, BRAZIL Received: October 19, 2015 Accepted: September 15, 2016 Published: October 25, 2016 Copyright: © 2016 Gao et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability Statement: Due to the ethical restriction, the datasets underlying the findings cannot be shared publicly. However, aggregate and nonidentifiable data are provided in the tables, and requests to access the original data can be sent to wei.gao@kcl.ac.uk or Irene.higginson@kcl.ac.uk.

Funding: Funding received by WG, VC, AW, RB, ES, KRC, IJH from the National Institute for Health Research, Health Services and Delivery Research Programme (12/130/47) http://www.nets.nihr.ac. uk/programmes/hsdr. Funding received by WG and

Wei Gao1*, Vincent Crosby2, Andrew Wilcock3, Rachael Burman1, Eli Silber4, Nilay Hepgul1, K Ray Chaudhuri5, Irene J. Higginson1, on behalf of the OPTCARE Neuro trial¶ 1 King’s College London, Faculty of Life Sciences and Medicine, Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, London, United Kingdom, 2 Palliative Medicine, Nottingham University Hospitals NHS Trust, Nottingham, United Kingdom, 3 Palliative Medicine and Medical Oncology, School of Medicine, University of Nottingham, Nottingham, United Kingdom, 4 Department of Neurology, Kings’ College Hospital, London, United Kingdom, 5 National Parkinson Foundation Centre of Excellence, Kings College Hospital and Kings College, London, United Kingdom ¶ Membership of the OPTCARE Neuro trial is provided in the Acknowledgments. * wei.gao@kcl.ac.uk

Abstract Background There is no standard palliative care outcome measure for people with progressive long term neurological conditions (LTNC). This study aims to determine the psychometric properties of a new 8-item palliative care outcome scale of symptom burden (IPOS Neuro-S8) in this population.

Data and Methods Data were merged from a Phase II palliative care intervention study in multiple sclerosis (MS) and a longitudinal observational study in idiopathic Parkinson’s disease (IPD), multiple system atrophy (MSA) and progressive supranuclear palsy (PSP). The IPOS Neuro-S8 was assessed for its data quality, score distribution, ceiling and floor effects, reliability, factor structure, convergent and discriminant validity, concurrent validity with generic (Palliative care Outcome Scale) and condition specific measures (Multiple Sclerosis Impact Scale; Non-motor Symptoms Questionnaire; Parkinson’s Disease Questionnaire), responsiveness and minimally clinically important difference.

Results Of the 134 participants, MS patients had a mean Extended Disability Status Scale score 7.8 (SD = 1.0), patients with an IPD, MSA or PSP were in Hoehn & Yahr stage 3–5. The

PLOS ONE | DOI:10.1371/journal.pone.0165379 October 25, 2016

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Psychometric Properties of an Outcome Measure for Long Term Neurological Conditions

IJH from the Collaboration for Leadership in Applied Health Research and Care South London, National Institute for Health Research which is a partnership between King’s Health Partners, St. George’s, University London, and St George’s Healthcare NHS Trust. http://www.clahrcsouthlondon.nihr.ac.uk/palliative-and-end-life-care.

IJH is a National Institute for Health Research senior investigator. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing Interests: The authors have declared that no competing interests exist.

IPOS Neuro-S8 had high data quality (2% missing), mean score 8 (SD = 5; range 0–32), no ceiling effects, borderline floor effects, good internal consistency (Cronbach’s α = 0.7) and moderate test-retest reliability (intraclass coefficient = 0.6). The results supported a moderately correlated two-factor structure (Pearson’s r = 0.5). It was moderately correlated with generic and condition specific measures (Pearson’s r: 0.5–0.6). There was some evidence for discriminant validity in IPD, MSA and PSP (p = 0.020), and for good responsiveness and longitudinal construct validity.

Conclusions IPOS Neuro-S8 shows acceptable to promising psychometric properties in common forms of progressive LTNCs. Future work needs to confirm these findings with larger samples and its usefulness in wider disease groups.

Introduction Progressive long term neurological conditions (LTNC) are a group of irreversible and degenerative diseases of the nervous system that share some common characteristics, such as an increasing deterioration in neurological function over time, leading to increasing disability, cognitive impairment and dependence on others. As the disease progresses, complex physical, psychosocial and spiritual issues can arise which require palliative care and integrated care provisions from multiple agencies [1–3]; the primary care focus also moves from cure to comfort, and the patient perspectives become central [4]. Little research is conducted on how best to integrate and coordinate these care services, and on the effectiveness of different care models among this population. One major barrier may be the lack of appropriate patient centred palliative care outcome measures (PCOM).

A number of disease specific PCOMs are in existence for LTNCs, e.g. the Multiple Sclerosis Impact Scale (MSIS-29)[5], the Parkinson’s Disease Questionnaire (PDQ-39, PDQ-8) [6, 7], and Non-Motor Symptoms Questionnaire (NMSQuest) [8], but all of these measures fail to adequately address the progressive nature of the LTNC and the resulting complex needs including palliative care needs. For example, none of the existing measures feature pain, dyspnoea and other distressing symptoms which are frequently reported by patients and are recommended as triggers for palliative care referral [1, 2, 9, 10].

The 10-item palliative care outcome scale (core POS) is a widely used PCOM for palliative care patients. However, it was designed for general palliative care purposes and when applied to LTNCs it is not as sensitive as the measure primarily focusses on key symptoms that require palliative care input [10–12]. A brief PCOM for palliative care needs, comprising five typical symptoms (pain, nausea, vomiting, mouth problems and sleeping difficulty), was found to have satisfactory psychometric properties and was sensitive to change in patients with multiple sclerosis (MS) [11–13]. In an observational study in patients with idiopathic Parkinson’s disease (IPD), multiple system atrophy (MSA) and progressive supranuclear palsy (PSP), a 20-item measure covering more comprehensive aspects of palliative care needs including symptoms was used [14].

It appears to be a promising tool but has not yet been through formal psychometric evaluation.

Based on the well validated core POS [15–17], several commonly used condition specific POS symptom versions [10–12], and clinical management guidelines for LTNCs [18, 19], we developed a new patient reported, integrated palliative care outcome measure that may be used to evaluate the outcome for people with progressive LTNC (IPOS Neuro).

PLOS ONE | DOI:10.1371/journal.pone.0165379 October 25, 2016

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655747 research-article2016

PMJ0010.1177/0269216316655747Palliative MedicineLovell et al.

Short Report

Understanding patterns and factors associated with place of death in patients with end-stage kidney disease: A retrospective cohort study

Palliative Medicine 2017, Vol. 31(3) 283­–288 © The Author(s) 2016

Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216316655747 journals.sagepub.com/home/pmj

Natasha Lovell1, Chris Jones2, Dawn Baynes3, Sarah Dinning3, Katie Vinen3 and Fliss EM Murtagh1

Abstract Background: Meeting place-of-death preferences is an important measure of the quality of end-of-life care. Systematic review shows that 42% of end-stage kidney disease patients prefer home death. Little research has been undertaken on place of death.

Aim: To understand patterns of place of death in patients with end-stage kidney disease known in one UK renal unit.

Design: A retrospective cohort study of all patients with chronic kidney disease stage 4–5, age ⩾75 and known to one UK renal unit, who died between 2006 and 2012. Patients were categorised into three management pathways: haemodialysis, conservative and pre-dialysis.

Results: A total of 321 patients (mean age, 82.7; standard deviation, 5.21) died (61.7% male). In all, 62.9% died in hospital (95% confidence interval, 57.5%–68.1%), 21.8% died in their usual place of residence (95% confidence interval, 17.5%–26.6%) and 15.3% died in an inpatient palliative care unit (95% confidence interval, 11.6%–19.5%). Management pathway and living circumstances were most strongly associated with place of death. Patients on the conservative pathway had four times the odds of dying out of hospital (odds ratio, 4.0; 95% confidence interval, 2.1–7.5; p < 0.01). Patients living alone were less likely to die out of hospital (odds ratio, 0.3; 95% confidence interval, 0.1–0.6; p < 0.01). There were also changes in place of death over time, with more patients dying out of hospital in 2012 compared to 2006 (odds ratio, 3.1; 95% confidence interval, 1.0–9.7; p < 0.05).

Conclusion: Most patients with end-stage kidney disease die in hospital, but patients managed without dialysis are significantly more likely to die outside of hospital. Planning ahead is key to be able to meet preference for place of death.

Keywords End-stage renal failure, chronic kidney diseases, palliative care, attitude to death, patient preference

What is already known about the topic?

•• Meeting preferences for place of death is an important measure of the quality of end-of-life care provided.

•• Preference for home death in end-stage kidney disease is estimated at 42%.

•• Hospital remains the most common place of death (58% between 2001 and 2008).

What this paper adds?

•• Key factors may influence place of death in renal disease, in particular renal management pathway, living circumstances and development of palliative care services within renal units.

1 Cicely

Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, King’s College London, London, UK 2Imperial College London, London, UK 3King’s College Hospital NHS Foundation Trust, London, UK

Corresponding author: Natasha Lovell, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, King’s College London, Bessemer Road, London SE5 9PJ, UK. Email: Natasha.lovell@kcl.ac.uk

Higginson et al. BMC Anesthesiology (2016) 16:11 DOI 10.1186/s12871-016-0177-2

RESEARCH ARTICLE

Open Access

The value of uncertainty in critical illness?

An ethnographic study of patterns and conflicts in care and decision-making trajectories I. J. Higginson1*, C. Rumble1, C. Shipman1, J. Koffman1, K. E. Sleeman1, M. Morgan2, P. Hopkins3, J. Noble3, W. Bernal3, S. Leonard3, O. Dampier3, W. Prentice1, R. Burman1 and M. Costantini4

Abstract Background: With increasingly intensive treatments and population ageing, more people face complex treatment and care decisions. We explored patterns of the decision-making processes during critical care, and sources of conflict and resolution.

Methods: Ethnographic study in two Intensive Care Units (ICUs) in an inner city hospital comprising: non-participant observation of general care and decisions, followed by case studies where treatment limitation decisions, comfort care and/or end of life discussions were occurring. These involved: semi-structured interviews with consenting families, where possible, patients; direct observations of care; and review of medical records.

Results: Initial non-participant observation included daytime, evenings, nights and weekends. The cases were 16 patients with varied diagnoses, aged 19-87 years; 19 family members were interviewed, aged 30-73 years. Cases were observed for <1 to 156 days (median 22), depending on length of ICU admission. Decisions were made serially over the whole trajectory, usually several days or weeks. We identified four trajectories with distinct patterns: curative care from admission; oscillating curative and comfort care; shift to comfort care; comfort care from admission. Some families considered decision-making a negative concept and preferred uncertainty. Conflict occurred most commonly in the trajectories with oscillating curative and comfort care. Conflict also occurred inside clinical teams. Families were most often involved in decision-making regarding care outcomes and seemed to find it easier when patients switched definitively from curative to comfort care. We found eight categories of decision-making; three related to the care outcomes (aim, place, response to needs) and five to the care processes (resuscitation, decision support, medications/ fluids, monitoring/interventions, other specialty involvement).

Conclusions: Decision-making in critical illness involves a web of discussions regarding the potential outcomes and processes of care, across the whole disease trajectory. When measures oscillate between curative and comfort there is greatest conflict. This suggests a need to support early communication, especially around values and preferred care outcomes, from which other decisions follow, including DNAR. Offering further support, possibly with expert palliative care, communication, and discussion of ‘trial of treatment’ may be beneficial at this time, rather than waiting until the ‘end of life’.

Keywords: End-of-life care, Palliative care, Intensive care unit, Critical care, Decision-making, Uncertainty, Pathways, DNACPR

* Correspondence: irene.higginson@kcl.ac.uk 1 King’s College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, Bessemer Road, Denmark Hill, London SE5 9PJ, UK Full list of author information is available at the end of the article © 2016 Higginson et al. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

637240 research-article2016

PMJ0010.1177/0269216316637240Palliative MedicineHarding et al.

Short Report

What palliative care–related problems do patients with drug-resistant or drug-susceptible tuberculosis experience on admission to hospital?

A cross-sectional self-report study

Palliative Medicine 2016, Vol. 30(9) 862­–868 © The Author(s) 2016

Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216316637240 pmj.sagepub.com

Richard Harding1, Kath Defilippi2,3 and David Cameron4,5

Abstract Background: The new World Health Organization’s ‘End TB’ strategy specifies palliative care within its strategic pillars. Limited data on patient-reported problems are available to inform an effective care response.

Aim: We aimed to (1) identify most burdensome problems, (2) compare intensity of problems for drug-susceptible and drug-resistant tuberculosis and (3) identify predictors of problem identifiers.

Design: Cross-sectional self-report quantitative study.

Setting/participants: Self-report palliative care problems (physical, psychological, social and spiritual) were collected among patients on admission to a general district hospital with tuberculosis and multidrug-resistant tuberculosis wards in South Africa.

Results: Totally, 114 patients were recruited. The items with worst score responses were worry (60.5%), pain (42.1%), help and advice to plan for the future (35.1%), symptoms (29.0%) and ability to share feelings (25.1%). In ordinal logistic regression, age was predictive of a higher (worse) score for total Palliative Outcome Scale total score (0.058, 95% confidence interval = 0.0018–0.099, p = 0.005) and Factor 2 (interpersonal wellbeing: 0.038, 95% confidence interval = 0.003–0.073, p = 0.031). Interestingly, multidrug-resistant tuberculosis was predictive of lower (better) score for both total Palliative Outcome Scale score and Factor 1 (physical and psychological wellbeing).

Weight, human immunodeficiency virus status and prior treatment were not significantly associated with any of the three.

Conclusion: Currently, patients with drug-susceptible tuberculosis are only admitted to hospital with complications, explaining their worse scores. The high burden of physical and psychosocial problems experienced by our sample provides strong evidence of the need for palliative care alongside potentially curative options.

Keywords Tuberculosis, drug resistance, palliative, hospital

What is already known about the topic?

•• This original study was implemented to address the absence of evidence identified in our prior review. The evidence was systematically reviewed and updated on 28 November 2015.The search terms such as ‘tuberculosis’, ‘TB’, ‘palliative’, ‘hospice’, ‘terminal’ and ‘end-of-life’ were combined within PubMed and MedLine, and no new primary evidence was identified.

•• The new World Health Organization’s (WHO) STOP TB strategy names palliative care as a required component of care, but there is no current evidence of the nature or severity of palliative care needs.

•• This WHO strategy includes palliative care in two of its three pillars. However, to date, no data have been generated on patient-reported palliative care needs to inform an effective clinical response.

1 Department

of Palliative Care, Policy & Rehabilitation, Cicely Saunders Institute, King’s College London, London, UK 2Hospice Palliative Care Association of South Africa, Cape Town, South Africa 3African Palliative Care Association, Kampala, Uganda 4Department of Family Medicine, University of Pretoria, Pretoria, South Africa

5Foundation

for Professional Development, Pretoria, South Africa

Corresponding author: Richard Harding, Department of Palliative Care, Policy & Rehabilitation, Cicely Saunders Institute, King’s College London, Bessemer Road, London SE5 9PJ, UK. Email: Richard.harding@kcl.ac.uk

Gao et al. BMC Cancer (2016) 16:727 DOI 10.1186/s12885-016-2695-1

RESEARCH ARTICLE

Open Access

Place of death in children and young people with cancer and implications for end of life care: a population-based study in England, 1993–2014 Wei Gao1* , Julia Verne2, Janet Peacock3, Charles Stiller4, Claudia Wells5, Anne Greenough6 and Irene J. Higginson1

Abstract Background: Efforts to improve end of life care (EoLC) have made tangible impacts on care in adults, including enabling more people to die at their preferred place of death (PoD), usually home or hospices. Little is known how the PoD in children and young people (CYP, ≤24 years) has changed over time, especially in the context of a series of national initiatives for EoLC improvement since the late 1990s. To inform evidence-based policy-making and service development, we evaluated the national trends of PoD and the associated factors in CYP who died with cancer.

Methods: Population-based observational study in the National Health Service (NHS) England, 1993-2014. All non-accidental CYP deaths with cancer (N = 12,774) were extracted from the death registration database of the Office for National Statistics (ONS).

Results: Hospital deaths reduced from >50 to 45 %, hospice deaths were rare but more than doubled from 6 % in 1993–2000 to 13 % in 2005–2014, and home deaths fluctuated at around 40 %. Those aged 0–19 years were more likely to die at home than young adults (adjusted proportion ratio (PRs): 1.23–1.62); haematological cancer patients or those with 2+ comorbid conditions had higher chances of hospital death (PRs for home: 0.18–0.75, hospice: 0.04–0.37); deprivation was associated with a reduced chance of home death (PRs: 0.76–0.84). The residential region affected hospice but not home deaths. The variations of PoD by cause of death, comorbid conditions and deprivation slightly decreased with time.

Conclusions: Hospitals and home were the main EoLC settings for CYP with cancer. Home death rates barely changed in the past two decades; deaths in hospitals remained the most common but slightly shifted towards hospices. CYP with haematological malignancy or with comorbid conditions had persistently high hospital deaths; these cases had an even lower chance of deaths in hospices (50 %) than at home. There were deprivation- and area-related inequalities in PoD which may need service- and/or policy-level intervention. The findings highlight a need for CYP specific initiatives to enhance EoLC support and capacities both at home and in hospices.

Keywords: End of life care, Children and young people, Place of death, Cancer, Palliative care, Inequality Abbreviations: CYP, Children and young people; ONS, Office for National Statistics; PEoLC, Palliative and end of life care; PoD, Place of death

* Correspondence: wei.gao@kcl.ac.uk 1 King’s College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, Bessemer Road, Denmark Hill, London SE5 9PJ, UK Full list of author information is available at the end of the article © 2016 The Author(s). Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

647610 research-article2016

PMJ0010.1177/0269216316647610Palliative MedicineEtkind et al.

Original Article

How does uncertainty shape patient experience in advanced illness?

A secondary analysis of qualitative data

Palliative Medicine 2017, Vol. 31(2) 171­–180 © The Author(s) 2016 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216316647610 journals.sagepub.com/home/pmj

Simon Noah Etkind, Katherine Bristowe, Katharine Bailey, Lucy Ellen Selman and Fliss EM Murtagh

Abstract Background: Uncertainty is common in advanced illness but is infrequently studied in this context. If poorly addressed, uncertainty can lead to adverse patient outcomes.

Aim: We aimed to understand patient experiences of uncertainty in advanced illness and develop a typology of patients’ responses and preferences to inform practice.

Design: Secondary analysis of qualitative interview transcripts. Studies were assessed for inclusion and interviews were sampled using maximum-variation sampling. Analysis used a thematic approach with 10% of coding cross-checked to enhance reliability.

Setting/participants: Qualitative interviews from six studies including patients with heart failure, chronic obstructive pulmonary disease, renal disease, cancer and liver failure.

Results: A total of 30 transcripts were analysed. Median age was 75 (range, 43–95), 12 patients were women. The impact of uncertainty was frequently discussed: the main related themes were engagement with illness, information needs, patient priorities and the period of time that patients mainly focused their attention on (temporal focus). A typology of patient responses to uncertainty was developed from these themes.

Conclusion: Uncertainty influences patient experience in advanced illness through affecting patients’ information needs, preferences and future priorities for care. Our typology aids understanding of how patients with advanced illness respond to uncertainty.

Assessment of these three factors may be a useful starting point to guide clinical assessment and shared decision making.

Keywords Uncertainty, palliative care, terminal care, qualitative research, comorbidity, communication

What is already known about the topic?

•• Patients with life-limiting illness commonly experience considerable uncertainty, yet uncertainty is under-researched in the context of life-limiting illness.

•• Much of this uncertainty cannot be eliminated, yet clinicians are often reluctant to discuss uncertainty with their patients.

•• If poorly addressed, uncertainty can result in poorer psychological outcomes for patients and increase use of healthcare resources.

What this paper adds?

•• In-depth analysis of the experience of uncertainty for patients with a range of advanced illnesses.

•• Information needs, temporal focus and engagement with illness are key concerns for patients.

•• A typology of patient responses to uncertainty based on these three factors is developed to inform clinical practice.

King’s College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, London, UK

Corresponding author: Simon Noah Etkind, Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King’s College London, Bessemer Road, London SE5 9PJ, UK. Email: simon.etkind@nhs.net

Ellis-Smith et al. BMC Medicine (2016) 14:38 DOI 10.1186/s12916-016-0582-x

RESEARCH ARTICLE

Open Access

Measures to assess commonly experienced symptoms for people with dementia in long-term care settings: a systematic review Clare Ellis-Smith*, Catherine J. Evans, Anna E. Bone, Lesley A. Henson, Mendwas Dzingina, Pauline M. Kane, Irene J. Higginson, Barbara A. Daveson and on behalf of BuildCARE

Abstract Background: High symptom burden is common in long-term care residents with dementia and results in distress and behavioral challenges if undetected. Physicians may have limited time to regularly examine all residents, particularly those unable to self-report, and may rely on reports from caregivers who are frequently in a good position to detect symptoms quickly. We aimed to identify proxy-completed assessment measures of symptoms experienced by people with dementia, and critically appraise the psychometric properties and applicability for use in long-term care settings by caregivers.

Methods: We searched Medline, EMBASE, PsycINFO, CINAHL and ASSIA from inception to 23 June 2015, supplemented by citation and reference searches. The search strategy used a combination of terms: dementia OR long-term care AND assessment AND symptoms (e.g. pain). Studies were included if they evaluated psychometric properties of proxy-completed symptom assessment measures for people with dementia in any setting or those of mixed cognitive abilities residing in long-term care settings. Measures were included if they did not require clinical training, and used proxy-observed behaviors to support assessment in verbally compromised people with dementia. Data were extracted on study setting and sample, measurement properties and psychometric properties. Measures were independently evaluated by two investigators using quality criteria for measurement properties, and evaluated for clinical applicability in long-term settings.

Results: Of the 19,942 studies identified, 40 studies evaluating 32 measures assessing pain (n = 12), oral health (n = 2), multiple neuropsychiatric symptoms (n = 2), depression (n = 8), anxiety (n = 2), psychological wellbeing (n = 4), and discomfort (n = 2) were included. The majority of studies (31/40) were conducted in long-term care settings although none of the neuropsychiatric or anxiety measures were validated in this setting. The pain assessments, PAINAD and PACSLAC had the strongest psychometric evidence. The oral health, discomfort, and three psychological wellbeing measures were validated in this setting but require further psychometric evaluation.

Depression measures were poor at detecting depression in this population. All measures require further investigation into agreement, responsiveness and interpretability.

Conclusions: Measures for pain are best developed for this population and setting. All other measures require further validation. A multi-symptom measure to support comprehensive assessment and monitoring in this population is required.

Keywords: Dementia, Long-term care, Palliative care, Review, Symptom assessment

* Correspondence: alexandra.c.ellis-smith@kcl.ac.uk Kingâ&#x20AC;&#x2122;s College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, Bessemer Road, London SE5 9PJ, UK Š 2016 Ellis-Smith et al. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Feature

Using routine data to improve palliative and end of life care Joanna M Davies,1 Wei Gao,1 Katherine E Sleeman,1 Katie Lindsey,2 Fliss E Murtagh,1 Joan M Teno,3 Luc Deliens,4 Bee Wee,5 Irene J Higginson,1 Julia Verne6

1

Kings College London, Cicely Saunders Institute, Department Palliative Care, Policy and Rehabilitation, London, UK 2 National End of Life Care Intelligence Network, Public Health England, London, UK 3 Division of Gerontology and Geriatric Medicine, Department of Medicine, Cambia Palliative Care Centre of Excellence, University of Washington, Seattle, Washington, USA 4 End of Life Care Research Group, University of Brussels and Ghent University, Brussels, Belgium 5 Department of Palliative Care, Experimental Medicine Division, University of Oxford, Oxford, UK 6 Knowledge & Intelligence Team (South West), Public Health England, Bristol, UK Correspondence to Dr Wei Gao, King’s College London, Cicely Saunders Institute, Palliative Care, Policy and Rehabilitation, Bessemer Road, London SE5 9PJ, UK; wei.gao@kcl.ac.uk Received 31 July 2015 Revised 16 October 2015 Accepted 16 December 2015 Published Online First 28 February 2016

To cite: Davies JM, Gao W, Sleeman KE, et al. BMJ Supportive & Palliative Care 2016;6:257–262.

Palliative and end of life care is essential to healthcare systems worldwide, yet a minute proportion of research funding is spent on palliative and end of life care research.

Routinely collected health and social care data provide an efficient and useful opportunity for evaluating and improving care for patients and families. There are excellent examples of routine data research in palliative and end of life care, but routine data resources are widely underutilised. We held four workshops on using routinely collected health and social care data in palliative and end of life care.

Researchers presented studies from the UK, USA and Europe. The aim was to highlight valuable examples of work with routine data including work with death registries, hospital activity records, primary care data and specialist palliative care registers. This article disseminates that work, describes the benefits of routine data research and identifies major challenges for the future use of routine data, including; access to data, improving data linkage, and the need for more palliative and end of life care specific data.

about the potential future use of these resources.

The events were hosted by the National End of Life Care Intelligence Network (NEoLCIN), part of Public Health England (PHE), in partnership with the Cicely Saunders Institute (CSI) at King’s College London. One hundred and twenty-five delegates attended the workshops, including researchers from the UK and internationally, representatives from data holding bodies, government organisations, charities, practitioners and experts by experience (also known as service users). The aim of this paper is to describe the current use and the benefits of routine data analysis in PEoLC. The main focus of this paper is on English data, though case studies from Europe and the USA which were presented at the workshops are included to highlight the use of routine data analysis in other healthcare systems. Based on the discussions from workshops, three future priorities are identified for the use of routine data in PEoLC.

BACKGROUND The palliative care resolution adopted by the WHO in 2014 recognises palliative and end of life care (PEoLC) services as essential and integral to health systems worldwide.1 However, evidence for effective models of care is limited, not least by current low levels of spending on PEoLC research; 0.24% of cancer research funding is currently spent on PEoLC research.2 Routinely collected health data provides a useful opportunity for evaluating and improving care for patients and families. In December 2013 and March 2014 we held a series of workshops to showcase routine data research in PEoLC, highlight examples of best practice, and stimulate discussion

WHAT IS ROUTINE DATA? Routine data are generated by administrative and clinical processes as opposed to data generated solely for the purposes of research. Death registry data, primary and secondary care data, and other routinely collected health data are increasingly used in PEoLC research. The inherent value of routine data is that it already exists and often on a population basis, negating the challenges associated with primary data collection in PEoLC. Each resource has particular strengths and weaknesses in the context of secondary use in PEoLC research.

The level (person, service or area), or unit that data are collected and made available at has consequences for how the data

ABSTRACT

Davies JM, et al. BMJ Supportive & Palliative Care 2016;6:257–262. doi:10.1136/bmjspcare-2015-000994

257

RESEARCH ARTICLE

Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating Endof-Life Care Natalia Calanzani1,2*, Irene J Higginson1, Jonathan Koffman1, Barbara Gomes1 1 King’s College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, London, United Kingdom, 2 University of Edinburgh, The Usher Institute of Population Health Sciences and Informatics, Centre for Population Health Sciences, Medical School, Edinburgh, United Kingdom * natalia.calanzani@ed.ac.uk

Abstract OPEN ACCESS Citation: Calanzani N, Higginson IJ, Koffman J, Gomes B (2016) Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care. PLoS ONE 11(1): e0146134. doi:10.1371/journal.pone.0146134 Editor: Eliseo A Eugenin, Rutgers University, UNITED STATES Received: June 16, 2015

Background Examination of factors independently associated with participation in mortality followback surveys is rare, even though these surveys are frequently used to evaluate end-of-life care.

We aimed to identify factors associated with 1) participation versus non-participation and 2) provision of an active refusal versus a silent refusal; and systematically examine reasons for refusal in a population-based mortality followback survey.

Methods

Accepted: December 14, 2015 Published: January 8, 2016 Copyright: © 2016 Calanzani et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability Statement: Data are available upon request, subject in some cases to approvals required by law. Researchers interested in accessing the data should contact the study coordinator Barbara Gomes (barbara.gomes@kcl.ac.uk) on first instance as she has the complete dataset used in this study (with merged qualitative and quantitative data) and can liaise with the other data controllers. Quantitative data were obtained from the UK Office for National Statistics (ONS), which is a third party. Access to data from ONS is controlled by UK law under the Statistics and Registration Service Act 2007, and

Postal survey about the end-of-life care received by 1516 people who died from cancer (aged 18), identified through death registrations in London, England (response rate 39.3%). The informant of death (a relative in 95.3% of cases) was contacted 4–10 months after the patient died. We used multivariate logistic regression to identify factors associated with participation/active refusals and content analysis to examine refusal reasons provided by 205 nonparticipants.

Findings The odds of partaking were higher for patients aged 90+ (AOR 3.48, 95%CI: 1.52–8.00, ref: 20–49yrs) and female informants (AOR 1.70, 95%CI: 1.33–2.16). Odds were lower for hospital deaths (AOR 0.62, 95%CI: 0.46–0.84, ref: home) and proxies other than spouses/partners (AORs 0.28 to 0.57). Proxies of patients born overseas were less likely to provide an active refusal (AOR 0.49; 95% CI: 0.32–0.77). Refusal reasons were often multidimensional, most commonly study-related (36.0%), proxy-related and grief-related (25.1% each). One limitation of this analysis is the large number of nonparticipants who did not provide reasons for refusal (715/920).

PLOS ONE | DOI:10.1371/journal.pone.0146134 January 8, 2016

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Participation and Refusal Reasons in a Mortality Followback Survey

researchers may be required to complete an application process - see http://www.ons.gov.uk/ons/ about-ons/business-transparency/freedom-ofinformation/what-can-i-request/approved-researcheraccreditation.html. Qualitative data (i.e. reasons for refusal) were volunteered by non-participants to the study team and access is covered by ethical approval from the National Health Service Research Ethics Committee (REC) London – Dulwich, formerly King’s College London REC (ref: 09/H0808/85). Approvals by the study team and the ONS are required so researchers can access the merged datasets used in this analysis which are currently securely stored at the Cicely Saunders Institute, Bessemer Road, London SE5 9PJ.

Conclusions

Funding: This study was funded by the charity Cicely Saunders International (cicelysaundersinternational. org) as part of Dr Barbara Gomes' PhD studies. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Mortality followback surveys with bereaved relatives are used in several countries such as US [1], the UK [2], Japan [3] and Italy [4] to evaluate end-of-life care, but the method faces ethical and methodological challenges [5]. From an ethical perspective, sensitive planning is required to avoid distress to a population that can be vulnerable [6–8]. Researchers should make sure they maximise research benefits, while minimising/not causing harm to participants [8–10].

From a methodological perspective, a core concern is how to increase participation to avoid low response rates (RRs).

Low RRs can result in nonresponse bias when there are systematic differences between participants and nonparticipants and these are correlated with the variables of interest in a study [11–13]. Methods to increase the odds of response in surveys have been widely investigated [12,14–19]. However, nonparticipation remains an unavoidable reality. Furthermore, comparing participants to nonparticipants is the exception rather than the rule; information on nonparticipants is rare in mortality followback surveys [13,20]. When this analysis is conducted, the adopted statistical methods are usually not consistent [21–24] or not clear [1,25–27]. It is therefore not surprising that factors such as ethnicity [21,28], age [21,27,29], relationship to deceased [21], gender [29], place of death [22], interval from time to death [22] and social deprivation [29] do not show a consistent association with participation across studies with bereaved relatives, even when the studied population and survey methods used are similar.

Crucially, the use of multivariate analysis to adjust for potential confounders has been rarely applied to examine nonresponse in this type of survey.

In addition to methodological issues, a key ethical concern in mortality followback surveys is whether participants and nonparticipants are being harmed by research. Current evidence suggests that most participants find it beneficial to take part and that many feel good about having the opportunity to help others in similar situations [30–34]. Those who do not participate, however, might have different views. A few studies have investigated the reasons why some bereaved relatives do not take part in mortality followback surveys. Their results suggest that grief and strong emotions [22,35–39] are common refusal reasons. Others include being “too busy” [36,37,39–42], not knowing the deceased [35,43], being too ill [36,39], or not being interested [39–42]. A better understanding of why people refuse to take part is still needed, as the knowledge can help identify areas in need of improvement in order to increase RRs. This study aims to determine factors associated with participation in a cancer mortality followback postal survey and to systematically investigate reasons for refusing to take part. It also determines factors associated with providing an active refusal as opposed to a silent refusal (i.e. those who did not contact the research team to refuse participation and did not return a completed questionnaire). With this knowledge, we are able to identify underrepresented groups and ways to improve overall response in postal bereavement surveys.

Competing Interests: The authors have declared that no competing interests exist.

Abbreviations: AOR, adjusted odds ratio; CI, Confidence Intervals; IMD, Index of Multiple Deprivation; ONS, Office for National Statistics; UK, United Kingdom.

Our survey better reached proxies of older patients while those dying in hospitals were underrepresented. Proxy characteristics played a role, with higher participation from women and spouses/partners. More information is needed about the care received by underrepresented groups. Study design improvements may guide future questionnaire development and help develop strategies to increase response rates.

Introduction

PLOS ONE | DOI:10.1371/journal.pone.0146134 January 8, 2016

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634601 research-article2016

PMJ0010.1177/0269216316634601Palliative MedicineBristowe et al.

Review Article

The bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner: A systematic review, thematic synthesis and modelling of the literature

Palliative Medicine 2016, Vol. 30(8) 730­–744 © The Author(s) 2016

Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216316634601 pmj.sagepub.com

Katherine Bristowe1, Steve Marshall2 and Richard Harding1

Abstract Background: Socially excluded populations have poorer access to care; however, little attention has been paid to lesbian, gay, bisexual and/or trans* people. Lesbian, gay, bisexual and/or trans* people are at increased risk of certain life-limiting illnesses and may not receive the care and support they need at the end of life and into bereavement.

Aim: To identify and appraise the evidence of the bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner and develop an explanatory model of lesbian, gay, bisexual and/or trans* partner bereavement.

Design: Systematic review (in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines) and thematic synthesis with assessment of reporting and rigour. Quantitative or qualitative articles reporting bereavement experiences of lesbian, gay, bisexual and/or trans* partners were included, excluding articles reporting multiple losses in the context of HIV or AIDS. Data sources: PsycINFO, MEDLINE, Web of Science, Scopus, Cochrane Library. Inclusion dates: database inception – 30 April 2015.

Results: A total of 23 articles reporting on 13 studies were identified. Studies described universal experiences of the pain of losing a partner; however, additional barriers and stressors were reported for lesbian, gay, bisexual and/or trans* people, including homophobia, failure to acknowledge the relationship, additional legal and financial issues and the ‘shadow’ of HIV or AIDS. A novel model was developed to explain how the experience for lesbian, gay, bisexual and/or trans* people is shaped by whether the relationship was disclosed and acknowledged in life and into bereavement and how this impacts upon needs and access to care.

Conclusion: There is a need for healthcare providers to avoid hetero-normative assumptions; be mindful of additional stressors in bereavement for lesbian, gay, bisexual and/or trans* people; and consider additional sources of support to deliver individualised holistic care.

Keywords Lesbian, gay, bisexual, transgender, bereavement, death, partner

What is already known about the topic?

•• Socially excluded populations have poorer access to healthcare.

•• People who identify as lesbian, gay, bisexual and/or trans* (LGBT) have increased risk of certain life-limiting illness, but evidence suggests that they may not access the care and support they need towards the end of life.

•• LGBT people continue to report discrimination from healthcare providers and fear discrimination in bereavement.

1 King’s

College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, London, UK 2 Department of Palliative Care, King’s College Hospital NHS Foundation Trust, London, UK

Corresponding author: Katherine Bristowe, King’s College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, Bessemer Road, London SE5 9PJ, UK. Email: Katherine.Bristowe@kcl.ac.uk

Developing a model of short-term integrated palliative and supportive care © The Author 2016. Published by Oxford University Press on behalf of the British Geriatrics Society.

Age and Ageing 2016; 45: 863–873 This is an Open Access article distributed under the terms of the Creative Commons Attribution doi: 10.1093/ageing/afw124 Published electronically 1 September 2016 License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.

Developing a model of short-term integrated palliative and supportive care for frail older people in community settings: perspectives of older people, carers and other key stakeholders 1

2

1

1

3

ANNA E. BONE , MYFANWY MORGAN , MATTHEW MADDOCKS , KATHERINE E. SLEEMAN , JULIET WRIGHT , SHAMIM TAHERZADEH4, CLARE ELLIS-SMITH1, IRENE J. HIGGINSON1, CATHERINE J. EVANS1,5 1

Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King’s College London, London, UK Institute of Pharmaceutical Science, King’s College London, London, UK 3 Department of Geriatric Medicine, Brighton and Sussex Medical School, Brighton, UK 4 Northbourne Medical Centre, Shoreham-by-Sea, West Sussex, UK 5 Sussex Community NHS Trust, Brighton and Hove, UK 2

Address correspondence to: Catherine J. Evans. Email: catherine.evans@kcl.ac.uk

Abstract Background: understanding how best to provide palliative care for frail older people with non-malignant conditions is an international priority. We aimed to develop a community-based episodic model of short-term integrated palliative and supportive care (SIPS) based on the views of service users and other key stakeholders in the United Kingdom. Method: transparent expert consultations with health professionals, voluntary sector and carer representatives including a consensus survey; and focus groups with older people and carers were used to generate recommendations for the SIPS model.

Discussions focused on three key components of the model: potential benefit of SIPS, timing of delivery and pro- cesses of integrated working between specialist palliative care and generalist practitioners. Content and descriptive analysis was employed and findings were integrated across the data sources.

Findings: we conducted two expert consultations (n = 63), a consensus survey (n = 42) and three focus groups (n = 17).

Potential benefits of SIPS included holistic assessment, opportunity for end of life discussion, symptom management and carer reassurance. Older people and carers advocated early access to SIPS, while other stakeholders proposed delivery based on complex symptom burden. A priority for integrated working was the assignment of a key worker to co-ordinate care, but the assignment criteria remain uncertain.

Interpretation: key stakeholders agree that a model of SIPS for frail older people with non-malignant conditions has potential benefits within community settings, but differ in opinion on the optimal timing and indications for this service. Our findings highlight the importance of consulting all key stakeholders in model development prior to feasibility evaluation.

Keywords: frail older people, palliative care, primary health care, qualitative research, consensus

1

680314 research-article2016

PMJ0010.1177/0269216316680314Palliative MedicineReilly et al.

Original Article

Breathlessness during daily activity: The psychometric properties of the London Chest Activity of Daily Living Scale in patients with advanced disease and refractory breathlessness

Palliative Medicine 1­–8 © The Author(s) 2016

Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216316680314 pmj.sagepub.com

Charles C Reilly1,2, Claudia Bausewein1,3, Rachel Garrod4, Caroline J Jolley5,6, John Moxham5 and Irene J Higginson1

Abstract Background: The London Chest Activities of Daily Living Scale measures the impact of breathlessness on both activity and social functioning. However, the London Chest Activities of Daily Living Scale is not routinely used in patients with advanced disease.

Aim: To assess the psychometric properties of the London Chest Activities of Daily Living Scale in patients with refractory breathlessness due to advanced disease.

Design: A cross-sectional secondary analysis of data from a randomised controlled parallel-group, pragmatic, single-blind fast-track trial (randomised controlled trial) investigating the effectiveness of an integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness, known as the Breathlessness Support Service (NCT01165034). All patients completed the following questionnaires: the London Chest Activities of Daily Living Scale, Chronic Respiratory Questionnaire, the Palliative care Outcome Scale, Palliative care Outcome Scale–symptoms, the Hospital Anxiety and Depression Scale and breathlessness measured on a numerical rating scale. Data quality, scaling assumptions, acceptability, internal consistency and construct validity of the London Chest Activities of Daily Living Scale were determined using standard psychometric approaches.

Setting/participants: Breathless patients with advanced malignant and non-malignant disease.

Results: A total of 88 patients were studied, primary diagnosis included; chronic obstructive pulmonary disease = 53, interstitial lung disease = 17, cancer = 18. Median (range) London Chest Activities of Daily Living Scale total score was 46.5 (14–67). No floor or ceiling effect was observed for the London Chest Activities of Daily Living Scale total score. Internal consistency was good, and Cronbach’s alpha for the London Chest Activities of Daily Living Scale total score was 0.90. Construct validity was good with 13 out of 15 a priori hypotheses met.

Conclusion: Psychometric analyses suggest that the London Chest Activities of Daily Living Scale is acceptable, reliable and valid in patients with advanced disease and refractory breathlessness.

Keywords Breathlessness, refractory breathlessness, activities of daily living, palliative care, breathlessness support service, therapies, dyspnoea, chronic obstructive pulmonary disease, cancer

1 Department

of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King’s College London, London, UK 2 Physiotherapy, King’s College Hospital NHS Foundation Trust, London, UK 3 Department of Palliative Medicine, Munich University Hospital, LMU Munich, Munich, Germany 4 Department of Respiratory Medicine, King’s College London, London, UK 5 Department of Asthma, Allergy and Respiratory Science, King’s College London, London, UK

6 Centre

of Human & Aerospace Physiological Sciences, King’s College London, London, UK

Corresponding author: Charles C Reilly, Physiotherapy, King’s College Hospital NHS Foundation Trust, 4th Floor Hambleden Wing, Denmark Hill, London SE5 9RS, UK. Email: charles.c.reilly@kcl.ac.uk

Intensive Care Med (2017) 43:463–464 DOI 10.1007/s00134-016-4630-y

LETTER

Do we have adequate tools and skills to manage uncertainty among patients and families in ICU? Richard Harding1*, Philip Hopkins2, Victoria Metaxa2 and Irene J. Higginson1 © 2016 Springer-Verlag Berlin Heidelberg and ESICM

Dear Editors, We are not using tools to optimise communication with patients and families facing uncertainty in the ICU. Many ICU admissions involve “clinical uncertainty”, i.e. treatment, prognosis and recovery are unpredictable.

With 21% ICU mortality rate, rising to 80–90% after forgoing “life-sustaining” therapies [1], staff and families face complexity decision-making and potential treatment withdrawal. Communicating uncertainty to distressed families with heterogeneous information preferences can be challenging [2].

Challenges in ICU end-of-life care may be due to rapid changes in patients’ conditions, prognostication difficulties, inadequate verification of patient/family preferences, poor information sharing, prior family understanding of condition, reluctance to plan for treatment withdrawal, lack of patient capacity, low institutional and staff ability to support spiritual beliefs and cultural values, and suboptimal team communication [3].

To determine the need for, and acceptability of, tools to address clinical uncertainty and communication needs for patients and families in ICU, we conducted a UKwide cross-sectional survey of ICUs via the UK Critical Care Society. Of 274 UK adult ICUs, we received 85 unique ICU responses (31% response rate). The findings are summarised in Table 1. Of those currently using any tool to identify preferences for or improve end-of-life care, these were mainly pathways for treatment withdrawal rather than communication aids.

*Correspondence: richard.harding@kcl.ac.uk 1 Department of Palliative Care Policy and Rehabilitation, Cicely Saunders Institute, King’s College London, Bessemer Road, London SE5 9RJ, UK Full author information is available at the end of the article

Given high mortality rates in ICU, and the complexities of appropriate communication, interventions are urgently needed to improve outcomes for patients and families. Our survey data reveal that psychosocial workers are rare in UK ICUs (a median of 0 posts), meaning that the clinical team must take responsibility for undertaking complex discussions. In current practice, communication tools to improve end-of-life care are rare.

However, an important resource is present to be able to train and support ICU staff, as the vast majority has a palliative care team on-site.

The UK ICU Guidelines require establishment of effective patients/relative communication, focus on communication interventions, communication of possible care outcomes, and provision of palliative care for those who will not recover. However, a review of the international literature concluded “we are not at a place that we can point to the practical and scalable interventions” to ensure ICU clinicians have basic end-of-life skills for critically ill patients [4]. Given global evidence of family stress and high mortality, the development and testing of appropriate tools is a research priority. The complexity of developing, testing and implementing these tools requires careful use of appropriate evaluation methods.

Novel interventions have been developed specifically for the ICU context, focusing on structured assessment and communication training, with evidence of improved outcomes [5]. The model originated in the USA, and was refined and tested in the UK. Given the lack of models in the literature originating from other countries, it is likely that the main finding from our survey holds true in other countries (i.e. that tools to aid communication with patients and families are uncommon in practice). We urge further clinical and academic research collaboration to meet the communication and psychosocial support

464

Table 1 Survey findings (n = 85) Variables

Results Median (range)

Beds

16 (6–76)

Staff Doctors

18.5 (5–60)

Nurses

90 (13–500)

Social workers

0 (0–10)

Allied therapists

6 (0–30)

Health care assistants

6 (0–30)

Pharmacists

1 (0–4)

Population Mixed

n = 78, 92%

Surgical

n = 1, 1%

Cardiothoracic

n = 1, 1%

Neurological

n = 1, 1%

Oncological

n = 1, 1%

Currently using tool to enhance end of life care

n = 22, 26%

Palliative care team onsite

n = 84, 99%

Would participate in RCT to test communication aid to address clinical uncertainty and end of life

n = 59, 69%

A communication tool to aid end-of-life care to address all ICU patients due to uncertainty

n = 44, 56%

needs of patients, families and their clinicians facing uncertainty in the ICU. Our data suggest high feasibility of a future trial. Firstly, the vast majority of ICUs have palliative care teams on-site to provide education, training and mentorship. Second, the majority would participate in an experimental evaluation of an intervention to improve communication. The relative paucity of evidence on this field could be considerably strengthened by cross-national approaches. Development and testing of an appropriate intervention could harness international multiprofessional clinical and academic ICU expertise, with an emphasis on implementation science to ensure appropriate refinement of tools to fit varying context.

Author details 1 Department of Palliative Care Policy and Rehabilitation, Cicely Saunders Institute, King’s College London, Bessemer Road, London SE5 9RJ, UK. 2 Critical Care, King’s College Hospital NHS Foundation Trust, London, UK.

Accepted: 18 November 2016 Published online: 8 December 2016

References 1. Azoulay E, Metnitz B, Sprung CL et al (2009) End-of-life practices in 282 intensive care units: data from the SAPS 3 database. Intensive Care Med 35(4):623–630 2. Higginson IJ, Rumble C, Shipman C et al (2016) The value of uncertainty in critical illness? An ethnographic study of patterns and conflicts in care and decision-making trajectories. BMC Anesthesiol 16:11 3. Papadimos TJ, Maldonado Y, Tripathi RS, Kothari DS, Rosenberg AL (2011) An overview of end-of-life issues in the intensive care unit. Int J Crit Illn Inj Sci 1(2):138–146 4. Curtis JR (2015) Palliative care in critical illness: challenges for research and practice. Palliat Med 29(4):291–292 5. Higginson IJ, Koffman J, Hopkins P et al (2013) Development and evaluation of the feasibility and effects on staff, patients, and families of a new tool, the psychosocial assessment and communication evaluation (PACE), to improve communication and palliative care in intensive care and during clinical uncertainty. BMC Med 11:213

637240 research-article2016

PMJ0010.1177/0269216316637240Palliative MedicineHarding et al.

Short Report

What palliative care–related problems do patients with drug-resistant or drug-susceptible tuberculosis experience on admission to hospital?

A cross-sectional self-report study

Palliative Medicine 2016, Vol. 30(9) 862­–868 © The Author(s) 2016

Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216316637240 pmj.sagepub.com

Richard Harding1, Kath Defilippi2,3 and David Cameron4,5

Abstract Background: The new World Health Organization’s ‘End TB’ strategy specifies palliative care within its strategic pillars. Limited data on patient-reported problems are available to inform an effective care response.

Aim: We aimed to (1) identify most burdensome problems, (2) compare intensity of problems for drug-susceptible and drug-resistant tuberculosis and (3) identify predictors of problem identifiers.

Design: Cross-sectional self-report quantitative study.

Setting/participants: Self-report palliative care problems (physical, psychological, social and spiritual) were collected among patients on admission to a general district hospital with tuberculosis and multidrug-resistant tuberculosis wards in South Africa.

Results: Totally, 114 patients were recruited. The items with worst score responses were worry (60.5%), pain (42.1%), help and advice to plan for the future (35.1%), symptoms (29.0%) and ability to share feelings (25.1%). In ordinal logistic regression, age was predictive of a higher (worse) score for total Palliative Outcome Scale total score (0.058, 95% confidence interval = 0.0018–0.099, p = 0.005) and Factor 2 (interpersonal wellbeing: 0.038, 95% confidence interval = 0.003–0.073, p = 0.031). Interestingly, multidrug-resistant tuberculosis was predictive of lower (better) score for both total Palliative Outcome Scale score and Factor 1 (physical and psychological wellbeing).

Weight, human immunodeficiency virus status and prior treatment were not significantly associated with any of the three.

Conclusion: Currently, patients with drug-susceptible tuberculosis are only admitted to hospital with complications, explaining their worse scores. The high burden of physical and psychosocial problems experienced by our sample provides strong evidence of the need for palliative care alongside potentially curative options.

Keywords Tuberculosis, drug resistance, palliative, hospital

What is already known about the topic?

•• This original study was implemented to address the absence of evidence identified in our prior review. The evidence was systematically reviewed and updated on 28 November 2015.The search terms such as ‘tuberculosis’, ‘TB’, ‘palliative’, ‘hospice’, ‘terminal’ and ‘end-of-life’ were combined within PubMed and MedLine, and no new primary evidence was identified.

•• The new World Health Organization’s (WHO) STOP TB strategy names palliative care as a required component of care, but there is no current evidence of the nature or severity of palliative care needs.

•• This WHO strategy includes palliative care in two of its three pillars. However, to date, no data have been generated on patient-reported palliative care needs to inform an effective clinical response.

1 Department

of Palliative Care, Policy & Rehabilitation, Cicely Saunders Institute, King’s College London, London, UK 2Hospice Palliative Care Association of South Africa, Cape Town, South Africa 3African Palliative Care Association, Kampala, Uganda 4Department of Family Medicine, University of Pretoria, Pretoria, South Africa

5Foundation

for Professional Development, Pretoria, South Africa

Corresponding author: Richard Harding, Department of Palliative Care, Policy & Rehabilitation, Cicely Saunders Institute, King’s College London, Bessemer Road, London SE5 9PJ, UK. Email: Richard.harding@kcl.ac.uk

675096 research-article2016

PMJ0010.1177/0269216316675096Palliative MedicineEllis-Smith et al.

Original Article

Development of a caregiver-reported measure to support systematic assessment of people with dementia in long-term care: The Integrated Palliative care Outcome Scale for Dementia

Palliative Medicine 1­–10 © The Author(s) 2016 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216316675096 pmj.sagepub.com

Clare Ellis-Smith, Catherine J Evans, Fliss EM Murtagh, Lesley A Henson, Alice M Firth, Irene J Higginson and Barbara A Daveson; on behalf of BuildCARE

Abstract Background: Symptom burden is common for long-term care residents with dementia which if untreated compromises quality of life. Measurement tools can support assessment of symptoms and problems but are not widely used in long-term care settings. We developed the Integrated Palliative care Outcome Scale for Dementia derived from the Palliative care Outcome Scale, Palliative care Outcome Scale–Symptom and Integrated Palliative care Outcome Scale.

Aim: To examine the content validity, acceptability and comprehension of Integrated Palliative care Outcome Scale for Dementia for routine use in long-term care settings for people with dementia and to refine Integrated Palliative care Outcome Scale for Dementia.

Design: A multi-method qualitative study consisting of focus groups, semi-structured interviews and cognitive interviews.

Setting/participants: Three residential long-term care settings in London, UK. Focus group and semi-structured interview participants included caregiver staff, family, general practitioners and district nurses. Caregiver staff were sampled purposively for cognitive interviews.

Results: A total of 26 respondents participated in the focus groups (n = 21) or semi-structured interviews (n = 5) and 10 caregiver staff completed cognitive interviews. Additional symptoms and problems included agitation, wandering, sleep problems, communication problems and diarrhoea. Refinements or lay terms were required to improve comprehension and consistency of item response for nausea, drowsiness, delusions/hallucinations, agitation, loss of interest, communication problems and interaction. A video presentation was required to support comprehension of instructions and assessment of verbally compromised residents.

Conclusion: Integrated Palliative care Outcome Scale for Dementia is a comprehensive and acceptable caregiver-reported measure to detect symptoms and problems in dementia. It is suitable for caregiver staff without professional training as it has been refined and tailored to maximise caregiver expertise, ready for further psychometric testing.

Keywords Dementia, long-term care, caregivers, symptom assessment, palliative care, qualitative research, outcome assessment

What is already known about this topic?

•• Long-term care residents with dementia have high comorbidity and symptom burden, which may be under-detected and under-treated resulting in reduced quality of life.

•• Caregiver staff in long-term care settings are well placed to detect symptoms and problems due to high resident contact and knowledge of residents.

Department of Palliative Care, Policy & Rehabilitation, Cicely Saunders Institute, King’s College London, London, UK

Corresponding author: Clare Ellis-Smith, Department of Palliative Care, Policy & Rehabilitation, Cicely Saunders Institute, King’s College London, Bessemer Road, London SE5 9PJ, UK. Email: alexandra.c.ellis-smith@kcl.ac.uk

RESEARCH ARTICLE

Psychometric Properties of a Generic, Patient-Centred Palliative Care Outcome Measure of Symptom Burden for People with Progressive Long Term Neurological Conditions a11111

OPEN ACCESS Citation: Gao W, Crosby V, Wilcock A, Burman R, Silber E, Hepgul N, et al. (2016) Psychometric Properties of a Generic, Patient-Centred Palliative Care Outcome Measure of Symptom Burden for People with Progressive Long Term Neurological Conditions. PLoS ONE 11(10): e0165379. doi:10.1371/journal.pone.0165379 Editor: Jerson Laks, Universidade Federal do Rio de Janeiro, BRAZIL Received: October 19, 2015 Accepted: September 15, 2016 Published: October 25, 2016 Copyright: © 2016 Gao et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability Statement: Due to the ethical restriction, the datasets underlying the findings cannot be shared publicly. However, aggregate and nonidentifiable data are provided in the tables, and requests to access the original data can be sent to wei.gao@kcl.ac.uk or Irene.higginson@kcl.ac.uk.

Funding: Funding received by WG, VC, AW, RB, ES, KRC, IJH from the National Institute for Health Research, Health Services and Delivery Research Programme (12/130/47) http://www.nets.nihr.ac. uk/programmes/hsdr. Funding received by WG and

Wei Gao1*, Vincent Crosby2, Andrew Wilcock3, Rachael Burman1, Eli Silber4, Nilay Hepgul1, K Ray Chaudhuri5, Irene J. Higginson1, on behalf of the OPTCARE Neuro trial¶ 1 King’s College London, Faculty of Life Sciences and Medicine, Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, London, United Kingdom, 2 Palliative Medicine, Nottingham University Hospitals NHS Trust, Nottingham, United Kingdom, 3 Palliative Medicine and Medical Oncology, School of Medicine, University of Nottingham, Nottingham, United Kingdom, 4 Department of Neurology, Kings’ College Hospital, London, United Kingdom, 5 National Parkinson Foundation Centre of Excellence, Kings College Hospital and Kings College, London, United Kingdom ¶ Membership of the OPTCARE Neuro trial is provided in the Acknowledgments. * wei.gao@kcl.ac.uk

Abstract Background There is no standard palliative care outcome measure for people with progressive long term neurological conditions (LTNC). This study aims to determine the psychometric properties of a new 8-item palliative care outcome scale of symptom burden (IPOS Neuro-S8) in this population.

Data and Methods Data were merged from a Phase II palliative care intervention study in multiple sclerosis (MS) and a longitudinal observational study in idiopathic Parkinson’s disease (IPD), multiple system atrophy (MSA) and progressive supranuclear palsy (PSP). The IPOS Neuro-S8 was assessed for its data quality, score distribution, ceiling and floor effects, reliability, factor structure, convergent and discriminant validity, concurrent validity with generic (Palliative care Outcome Scale) and condition specific measures (Multiple Sclerosis Impact Scale; Non-motor Symptoms Questionnaire; Parkinson’s Disease Questionnaire), responsiveness and minimally clinically important difference.

Results Of the 134 participants, MS patients had a mean Extended Disability Status Scale score 7.8 (SD = 1.0), patients with an IPD, MSA or PSP were in Hoehn & Yahr stage 3–5. The

PLOS ONE | DOI:10.1371/journal.pone.0165379 October 25, 2016

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Psychometric Properties of an Outcome Measure for Long Term Neurological Conditions

IJH from the Collaboration for Leadership in Applied Health Research and Care South London, National Institute for Health Research which is a partnership between King’s Health Partners, St. George’s, University London, and St George’s Healthcare NHS Trust. http://www.clahrcsouthlondon.nihr.ac.uk/palliative-and-end-life-care.

IJH is a National Institute for Health Research senior investigator. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing Interests: The authors have declared that no competing interests exist.

IPOS Neuro-S8 had high data quality (2% missing), mean score 8 (SD = 5; range 0–32), no ceiling effects, borderline floor effects, good internal consistency (Cronbach’s α = 0.7) and moderate test-retest reliability (intraclass coefficient = 0.6). The results supported a moderately correlated two-factor structure (Pearson’s r = 0.5). It was moderately correlated with generic and condition specific measures (Pearson’s r: 0.5–0.6). There was some evidence for discriminant validity in IPD, MSA and PSP (p = 0.020), and for good responsiveness and longitudinal construct validity.

Conclusions IPOS Neuro-S8 shows acceptable to promising psychometric properties in common forms of progressive LTNCs. Future work needs to confirm these findings with larger samples and its usefulness in wider disease groups.

Introduction Progressive long term neurological conditions (LTNC) are a group of irreversible and degenerative diseases of the nervous system that share some common characteristics, such as an increasing deterioration in neurological function over time, leading to increasing disability, cognitive impairment and dependence on others. As the disease progresses, complex physical, psychosocial and spiritual issues can arise which require palliative care and integrated care provisions from multiple agencies [1–3]; the primary care focus also moves from cure to comfort, and the patient perspectives become central [4]. Little research is conducted on how best to integrate and coordinate these care services, and on the effectiveness of different care models among this population. One major barrier may be the lack of appropriate patient centred palliative care outcome measures (PCOM).

A number of disease specific PCOMs are in existence for LTNCs, e.g. the Multiple Sclerosis Impact Scale (MSIS-29)[5], the Parkinson’s Disease Questionnaire (PDQ-39, PDQ-8) [6, 7], and Non-Motor Symptoms Questionnaire (NMSQuest) [8], but all of these measures fail to adequately address the progressive nature of the LTNC and the resulting complex needs including palliative care needs. For example, none of the existing measures feature pain, dyspnoea and other distressing symptoms which are frequently reported by patients and are recommended as triggers for palliative care referral [1, 2, 9, 10].

The 10-item palliative care outcome scale (core POS) is a widely used PCOM for palliative care patients. However, it was designed for general palliative care purposes and when applied to LTNCs it is not as sensitive as the measure primarily focusses on key symptoms that require palliative care input [10–12]. A brief PCOM for palliative care needs, comprising five typical symptoms (pain, nausea, vomiting, mouth problems and sleeping difficulty), was found to have satisfactory psychometric properties and was sensitive to change in patients with multiple sclerosis (MS) [11–13]. In an observational study in patients with idiopathic Parkinson’s disease (IPD), multiple system atrophy (MSA) and progressive supranuclear palsy (PSP), a 20-item measure covering more comprehensive aspects of palliative care needs including symptoms was used [14].

It appears to be a promising tool but has not yet been through formal psychometric evaluation.

Based on the well validated core POS [15–17], several commonly used condition specific POS symptom versions [10–12], and clinical management guidelines for LTNCs [18, 19], we developed a new patient reported, integrated palliative care outcome measure that may be used to evaluate the outcome for people with progressive LTNC (IPOS Neuro).

PLOS ONE | DOI:10.1371/journal.pone.0165379 October 25, 2016

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Age and Ageing 2017; 46: 300–309 © The Author 2016. Published by Oxford University Press on behalf of the British Geriatrics Society. doi: 10.1093/ageing/afw193 All rights reserved. For Permissions, please email: journals.permissions@oup.com Published electronically 3 November 2016

How empowering is hospital care for older people with advanced disease? Barriers and facilitators from a cross-national ethnography in England, Ireland and the USA LUCY ELLEN SELMAN1,2, BARBARA A. DAVESON1, MELINDA SMITH1, BRIDGET JOHNSTON3, KAREN RYAN4, R. SEAN MORRISON5, CATY PANNELL1, REGINA MCQUILLAN6, SUZANNE DE WOLF-LINDER1, STEVEN Z. PANTILAT7, LARA KLASS1, DIANE MEIER5, CHARLES NORMAND3, IRENE J. HIGGINSON1 1

Department of Palliative Care, Policy and Rehabilitation, King’s College London, Cicely Saunders Institute, London SE5 9PJ, UK Bristol Randomised Controlled Trials Collaboration, School of Social and Community Medicine, University of Bristol, Bristol BS8 2PS, UK 3 Centre of Health Policy and Management School of Medicine, Trinity College, University of Dublin, Dublin, Ireland 4 Mater Misericordiae University Hospital, Dublin, Ireland 5 Brookdale Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA 6 Beaumont Hospital, Dublin, Ireland 7 School of Medicine, University of California San Francisco, San Francisco, CA, USA 2

Address correspondence to: L. E. Selman. Tel: +44 207 848 5566; Fax +44 207 848 5517. Email: lucy.selman@kcl.ac.uk

Abstract Background: patient empowerment, through which patients become self-determining agents with some control over their health and healthcare, is a common theme across health policies globally. Most care for older people is in the acute setting, but there is little evidence to inform the delivery of empowering hospital care.

Objective: we aimed to explore challenges to and facilitators of empowerment among older people with advanced disease in hospital, and the impact of palliative care.

Methods: we conducted an ethnography in six hospitals in England, Ireland and the USA. The ethnography involved: interviews with patients aged ≥65, informal caregivers, specialist palliative care (SPC) staff and other clinicians who cared for older adults with advanced disease, and fieldwork. Data were analysed using directed thematic analysis.

Results: analysis of 91 interviews and 340 h of observational data revealed substantial challenges to empowerment: poor communication and information provision, combined with routinised and fragmented inpatient care, restricted patients’ self-efficacy, self-management, choice and decision-making. Information and knowledge were often necessary for empowerment, but not sufficient: empowerment depended on patient-centredness being enacted at an organisational and staff level.

SPC facilitated empowerment by prioritising patient-centred care, tailored communication and information provision, and the support of other clinicians.

Conclusions: empowering older people in the acute setting requires changes throughout the health system. Facilitators of empowerment include excellent staff–patient communication, patient-centred, relational care, an organisational focus on patient experience rather than throughput, and appropriate access to SPC. Findings have relevance for many high- and middle-income countries with a growing population of older patients with advanced disease.

Keywords: empowerment, inpatients, hospitals, aged, palliative care, older people

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Open Access

Research

‘I’ll be in a safe place’: a qualitative study of the decisions taken by people with advanced cancer to seek emergency department care Lesley A Henson,1 Irene J Higginson,1 Barbara A Daveson,1 Clare Ellis-Smith,1 Jonathan Koffman,1 Myfanwy Morgan,2 Wei Gao,1 on behalf of BuildCARE

To cite: Henson LA, Higginson IJ, Daveson BA, et al. ‘I’ll be in a safe place’: a qualitative study of the decisions taken by people with advanced cancer to seek emergency department care.

BMJ Open 2016;6:e012134. doi:10.1136/bmjopen-2016012134 ▸ Prepublication history and additional material is available. To view please visit the journal (http://dx.doi.org/ 10.1136/bmjopen-2016012134).

Received 1 April 2016 Revised 1 July 2016 Accepted 8 September 2016

1

Faculty of Life Sciences & Medicine, Division of Palliative Care, Policy & Rehabilitation, King’s College London, London, UK 2 Faculty of Life Sciences & Medicine, Division of Health & Social Care Research, King’s College London, London, UK Correspondence to Dr Lesley A Henson; lesley.henson@kcl.ac.uk

ABSTRACT Objective: To explore the decisions of people with advanced cancer and their caregivers to seek emergency department (ED) care, and understand the issues that influence the decision-making process.

Design: Cross-sectional qualitative study incorporating semistructured patient and caregiver interviews.

Methods: Between December 2014 and July 2015, semistructured interviews were conducted with 18 people with advanced cancer, all of whom had recently attended the ED of a large university teaching hospital located in south-east London; and six of their caregivers. Interviews were audio recorded, transcribed verbatim and analysed using a constant comparative approach. Padgett and Brodsky’s modified version of the ‘Behavioral Model of Health Services Use’ was used as a framework to guide the study.

Results: Issues influencing the decision-making process included: (1) disease-related anxiety—those with greater anxiety related to their cancer diagnosis interpreted their symptoms as more severe and/or requiring immediate attention; (2) prior patterns of health-seeking behaviour—at times of crisis participants defaulted to previously used services; (3) feelings of safety and familiarity with the hospital setting —many felt reassured by the presence of healthcare professionals and monitoring of their condition; and, (4) difficulties accessing community healthcare services —especially urgently and/or out-of-hours.

Conclusions: These data provide healthcare professionals and policymakers with a greater understanding of how systems of care may be developed to help reduce ED visits by people with advanced cancer. In particular, our findings suggest that the number of ED visits could be reduced with greater end-of-life symptom support and education, earlier collaboration between oncology and palliative care, and with increased access to community healthcare services.

BACKGROUND A large proportion of all healthcare expenditure in developed countries is consumed by care for those in the last year of life; in the

Strengths and limitations of this study ▪ Understanding what influences people with advanced cancer to seek emergency department (ED) care is key to developing initiatives aimed at reducing high attendance; to date, however, such evidence is limited. To address this issue we conducted a qualitative interview study exploring the decision-making process of people with advanced cancer and their caregivers to seek ED care.

▪ Semistructured in-depth interviews were conducted with 18 people with advanced cancer, all of whom had recently attended the ED of a large university teaching hospital located in south-east London; and six of their caregivers.

▪ We adopted a maximum variation (heterogeneity) sampling strategy to identify people with a range of characteristics and capture potentially richer and more diverse data relevant to the research question.

▪ Our study interviewed people who decided to seek ED care. The decision-making process of those who used alternative services was not explored and is a limitation of this research.

UK this is estimated at 10–20% of the National Health Service (NHS) budget, while in the USA it accounts for as much as 30% of the Medicare budget.1 2 This pattern of spending is especially pronounced for people with cancer. Despite the cancer trajectory being highly predictable, costs escalate at an exponential rate up to the time of death,3 with the additional costs almost entirely attributable to an increased use of acute hospital services, in particular emergency department (ED) visits and unplanned hospital admissions.1 4 The increased use of acute hospital services towards the end-of-life would not be such a concern if it improved outcomes for patients with cancer and their families.

Henson LA, et al. BMJ Open 2016;6:e012134. doi:10.1136/bmjopen-2016-012134

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[Intervention Review]

Neuromuscular electrical stimulation for muscle weakness in adults with advanced disease Sarah Jones1,2 , William D-C Man1 ,2 , Wei Gao3 , Irene J Higginson3 , Andrew Wilcock4 , Matthew Maddocks5 1 NIHR Respiratory Biomedical Research Unit, Royal Brompton & Harefield NHS Foundation Trust and Imperial College, London, UK. 2 Harefield Pulmonary Rehabilitation Unit, Harefield Hospital, Middlesex, UK. 3 Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King’s College London, London, UK. 4 Hayward House Macmillan Specialist Palliative Care Unit, University of Nottingham, Nottingham, UK. 5 Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King’s College London, London, UK

Contact address: Matthew Maddocks, Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King’s College London, Denmark Hill, London, SE5 9PJ, UK. matthew.maddocks@kcl.ac.uk.

Editorial group: Cochrane Pain, Palliative and Supportive Care Group.

Publication status and date: Stable (no update expected for reasons given in ’What’s new’), published in Issue 10, 2016.

Review content assessed as up-to-date: 6 January 2016.

Citation: Jones S, Man WDC, Gao W, Higginson IJ, Wilcock A, Maddocks M. Neuromuscular electrical stimulation for muscle weakness in adults with advanced disease. Cochrane Database of Systematic Reviews 2016, Issue 10. Art. No.: CD009419. DOI: 10.1002/14651858.CD009419.pub3.

Copyright © 2016 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.

ABSTRACT Background This review is an update of a previously published review in the Cochrane Database of Systematic Reviews Issue 1, 2013 on Neuromuscular electrical stimulation for muscle weakness in adults with advanced disease.

Patients with advanced progressive disease often experience muscle weakness, which can impact adversely on their ability to be independent and their quality of life. In those patients who are unable or unwilling to undertake whole-body exercise, neuromuscular electrical stimulation (NMES) may be an alternative treatment to enhance lower limb muscle strength. Programmes of NMES appear to be acceptable to patients and have led to improvements in muscle function, exercise capacity, and quality of life. However, estimates regarding the effectiveness of NMES based on individual studies lack power and precision.

Objectives Primary objective: to evaluate the effectiveness of NMES on quadriceps muscle strength in adults with advanced disease. Secondary objectives: to examine the safety and acceptability of NMES, and its effect on peripheral muscle function (strength or endurance), muscle mass, exercise capacity, breathlessness, and health-related quality of life.

Search methods We identified studies from searches of the Cochrane Central Register of Controlled Trials (CENTRAL), Cochrane Database of Systematic Reviews (CDSR), and Database of Abstracts of Reviews of Effects (DARE) (the Cochrane Library), MEDLINE (OVID), Embase (OVID), CINAHL (EBSCO), and PsycINFO (OVID) databases to January 2016; citation searches, conference proceedings, and previous systematic reviews.

Selection criteria We included randomised controlled trials in adults with advanced chronic respiratory disease, chronic heart failure, cancer, or HIV/ AIDS comparing a programme of NMES as a sole or adjunct intervention to no treatment, placebo NMES, or an active control. We imposed no language restriction.

Neuromuscular electrical stimulation for muscle weakness in adults with advanced disease (Review) Copyright © 2016 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.

Data collection and analysis Two review authors independently extracted data on study design, participants, interventions, and outcomes. We assessed risk of bias using the Cochrane ’Risk of bias’ tool. We calculated mean differences (MD) or standardised mean differences (SMD) between intervention and control groups for outcomes with sufficient data; for other outcomes we described findings from individual studies.

We assessed the evidence using GRADE and created a ’Summary of findings’ table.

Main results Eighteen studies (20 reports) involving a total of 933 participants with COPD, chronic respiratory disease, chronic heart failure, and/ or thoracic cancer met the inclusion criteria for this update, an additional seven studies since the previous version of this review. All but one study that compared NMES to resistance training compared a programme of NMES to no treatment or placebo NMES. Most studies were conducted in a single centre and had a risk of bias arising from a lack of participant or assessor blinding and small study size. The quality of the evidence using GRADE comparing NMES to control was low for quadriceps muscle strength, moderate for occurrence of adverse events, and very low to low for all other secondary outcomes. We downgraded the quality of evidence ratings predominantly due to inconsistency among study findings and imprecision regarding estimates of effect. The included studies reported no serious adverse events and a low incidence of muscle soreness following NMES. NMES led to a statistically significant improvement in quadriceps muscle strength as compared to the control (12 studies; 781 participants; SMD 0.53, 95% confidence interval (CI) 0.19 to 0.87), equating to a difference of approximately 1.1 kg. An increase in muscle mass was also observed following NMES, though the observable effect appeared dependent on the assessment modality used (eight studies, 314 participants). Across tests of exercise performance, mean differences compared to control were statistically significant for the 6-minute walk test (seven studies; 317 participants; 35 m, 95% CI 14 to 56), but not for the incremental shuttle walk test (three studies; 434 participants; 9 m, 95% CI -35 to 52), endurance shuttle walk test (four studies; 452 participants; 64 m, 95% CI -18 to 146), or for cardiopulmonary exercise testing with cycle ergometry (six studies; 141 participants; 45 mL/minute, 95% CI -7 to 97).

Limited data were available for other secondary outcomes, and we could not determine the most beneficial type of NMES programme.

Authors’ conclusions The overall conclusions have not changed from the last publication of this review, although we have included more data, new analyses, and an assessment of the quality of the evidence using the GRADE approach. NMES may be an effective treatment for muscle weakness in adults with advanced progressive disease, and could be considered as an exercise treatment for use within rehabilitation programmes.

Further research is very likely to have an important impact on our confidence in the estimate of effect and may change the estimate. We recommend further research to understand the role of NMES as a component of, and in relation to, existing rehabilitation approaches.

For example, studies may consider examining NMES as an adjuvant treatment to enhance the strengthening effect of programmes, or support patients with muscle weakness who have difficulty engaging with existing services.

PLAIN LANGUAGE SUMMARY Muscle stimulation for weakness in adults with advanced disease Background Individual studies suggest that neuromuscular electrical stimulation, or NMES, may help improve the muscle weakness that people often experience as a consequence of a progressive disease. NMES uses a lightweight stimulator unit and skin electrodes to produce a controlled and comfortable muscle contraction. Being a passive form of exercise, NMES allows patients to exercise their leg muscles at home whilst seated. This may be particularly helpful for people who are unable to take part in more strenuous forms of exercise, for example because of shortness of breath or fatigue.

Key results In this review update we considered 18 clinical studies comparing NMES to either no exercise, placebo NMES, or weight training in groups of people with advanced chronic respiratory disease, chronic heart failure, and/or cancer of the lungs. NMES appeared to be more effective than the control conditions at improving thigh muscle strength. We also observed a positive effect on this outcome when precise measures were used to assess muscle bulk. The evidence for an effect of NMES on ability to exercise was inconclusive.

Further research is required to understand how NMES can be used within broader rehabilitation approaches that combine exercise with education and behaviours to reduce the impact of muscle weakness on daily life, for example becoming more physically active.

Neuromuscular electrical stimulation for muscle weakness in adults with advanced disease (Review) Copyright © 2016 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.

Higginson et al. BMC Medicine (2017) 15:19 DOI 10.1186/s12916-016-0776-2

RESEARCH ARTICLE

Open Access

Which patients with advanced respiratory disease die in hospital? A 14-year population-based study of trends and associated factors Irene J. Higginson1*, Charles C. Reilly1, Sabrina Bajwah1, Matthew Maddocks1, Massimo Costantini2, Wei Gao1, on behalf of the GUIDE_Care project

Abstract Background: Strategies in many countries have sought to improve palliative care and reduce hospital deaths for non-cancer patients, but their effects are not evaluated. We aimed to determine the trends and factors associated with dying in hospital in two common progressive respiratory diseases, and the impact of a national end of life care (EoLC) strategy to reduce deaths in hospital.

Methods: This population-based observational study linked death registration data for people in England dying from chronic obstructive pulmonary disease (COPD) or interstitial pulmonary diseases (IPD). We plotted age- and sex-standardised trends, assessed during the pre-strategy (2001–2004), first strategy phase (2004–2008), and strategy intensification (2009–2014) periods, and identified factors associated with hospital death using multiple adjusted proportion ratios (PRs).

Results: Over 14 years, 380,232 people died from COPD (334,520) or IPD (45,712). Deaths from COPD and IPD increased by 0.9% and 9.2% annually, respectively. Death in hospital was most common (67% COPD, 70% IPD).

Dying in hospice was rare (0.9% COPD, 2.9% IPD). After a plateau in 2004–2005, hospital deaths fell (PRs 0.92–0.94).

Co-morbidities and deprivation independently increased the chances of dying in hospital, with larger effects in IPD (PRs 1.01–1.55) than COPD (PRs 1.01–1.39) and dose-response gradients. The impact of multimorbidity increased over time; hospital deaths did not fall for people with two or more co-morbidities in COPD, nor one or more in IPD. Living in rural areas (PRs 0.94–0.94) or outside London (PRs, 0.89–0.98) reduced the chances of hospital death. In IPD, increased age reduced the likelihood of hospital death (PR 0.81, ≥ 85 versus ≤ 54 years); divergently, in COPD, being aged 65–74 years was associated with increased hospital deaths (PR 1.13, versus ≤ 54 years). The independent effects of sex and marital status differed for COPD versus IPD (PRs 0.89–1.04); in COPD, hospital death was associated with being married.

Conclusions: The EoLC strategy appeared to have contributed to tangible reductions in hospital deaths, but did not reach people with multimorbidity and this gap widened over time. Integrating palliative care earlier in the disease trajectory especially in deprived areas and cities, and where multimorbidity is present, should be boosted, taking into account the different demographic factors in COPD and IPD. Keywords: Hospital, Palliative care, End of life care, Chronic obstructive pulmonary disease, Interstitial pulmonary diseases, Interstitial lung disease, Respiratory, Policy, Place of death

* Correspondence: irene.higginson@kcl.ac.uk 1 Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London, Bessemer Road, London SE5 9PJ, UK Full list of author information is available at the end of the article © The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

690994 research-article2017

PMJ0010.1177/0269216317690994Palliative MedicineDzingina et al.

Original Article

Variations in the cost of formal and informal health care for patients with advanced chronic disease and refractory breathlessness: A cross-sectional secondary analysis

Palliative Medicine 2017, Vol. 31(4) 369­–377 © The Author(s) 2017 https://doi.org/10.1177/0269216317690994 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216317690994 journals.sagepub.com/home/pmj

Mendwas D Dzingina1, Charles C Reilly1, Claudia Bausewein2, Caroline J Jolley3, John Moxham3, Paul McCrone4, Irene J Higginson1 and Deokhee Yi1

Abstract Background: Refractory breathlessness in advanced chronic disease leads to high levels of disability, anxiety and social isolation.

These result in high health-resource use, although this is not quantified.

Aims: To measure the cost of care for patients with advanced disease and refractory breathlessness and to identify factors associated with high costs.

Design: A cross-sectional secondary analysis of data from a randomised controlled trial.

Setting/participants: Patients with advanced chronic disease and refractory breathlessness recruited from three National Health Service hospitals and via general practitioners in South London.

Results: Of 105 patients recruited, the mean cost of formal care was £3253 (standard deviation £3652) for 3 months. The largest contributions to formal-care cost were hospital admissions (>60%), and palliative care contributed <1%. When informal care was included, the total cost increased by >250% to £11,507 (standard deviation £9911). Increased patient disability resulting from breathlessness was associated with high cost (£629 per unit increase in disability score; p = 0.006). Increased breathlessness on exertion and the presence of an informal carer were also significantly associated with high cost. Patients with chronic obstructive pulmonary disease tended to have higher healthcare costs than other patients.

Conclusion: Informal carers contribute significantly to the care of patients with advanced disease and refractory breathlessness.

Disability resulting from breathlessness is an important clinical cost driver. It is important for policy makers to support and acknowledge the contributions of informal carers. Further research is required to assess the clinical- and cost-effectiveness of palliative care interventions in reducing disability resulting from breathlessness in this patient group.

Keywords Healthcare costs, palliative care, terminal care, end-of-life care, chronic disease, breathlessness, dyspnoea, cancer, chronic obstructive pulmonary disease, heart failure, interstitial lung diseases What is already known about the topic?

•• Refractory breathlessness in advanced chronic disease leads to high levels of disability, anxiety and social isolation.

•• These result in high health-resource use, although this is not quantified.

•• We also do not know what factors are associated with high cost in these patients.

1 Cicely

Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, King’s College London, London, UK 2 Department of Palliative Medicine, Munich University Hospital, Munich, Germany 3 Department of Respiratory Medicine and Allergy, King’s College London, London, UK

4 Institute

of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK

Corresponding author: Mendwas D Dzingina, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, King’s College London, Denmark Hill, London SE5 9PJ, UK. Email: Mendwas.dzingina@kcl.ac.uk

Selman et al. BMC Palliative Care (2017) 16:17 DOI 10.1186/s12904-017-0191-2

RESEARCH ARTICLE

Open Access

Primary care physicians’ educational needs and learning preferences in end of life care: A focus group study in the UK Lucy Ellen Selman1*, Lisa Jane Brighton2, Vicky Robinson2, Rob George2,3, Shaheen A. Khan4, Rachel Burman5 and Jonathan Koffman2

Abstract Background: Primary care physicians (General Practitioners (GPs)) play a pivotal role in providing end of life care (EoLC). However, many lack confidence in this area, and the quality of EoLC by GPs can be problematic. Evidence regarding educational needs, learning preferences and the acceptability of evaluation methods is needed to inform the development and testing of EoLC education. This study therefore aimed to explore GPs’ EoLC educational needs and preferences for learning and evaluation.

Methods: A qualitative focus group study was conducted with qualified GPs and GP trainees in the UK. Audio recordings were transcribed and analysed thematically. Expert review of the coding frame and dual coding of transcripts maximised rigour.

Results: Twenty-eight GPs (10 fully qualified, 18 trainees) participated in five focus groups. Four major themes emerged: (1) why education is needed, (2) perceived educational needs, (3) learning preferences, and (4) evaluation preferences. EoLC was perceived as emotionally and clinically challenging. Educational needs included: identifying patients for palliative care; responsibilities and teamwork; out-of-hours care; having difficult conversations; symptom management; non-malignant conditions; and paediatric palliative care. Participants preferred learning through experience, working alongside specialist palliative care staff, and discussion of real cases, to didactic methods and e-learning. 360° appraisals and behavioural assessment using videoing or simulated interactions were considered problematic. Self-assessment questionnaires and patient and family outcome measures were acceptable, if used and interpreted correctly.

Conclusions: GPs require education and support in EoLC, particularly the management of complex clinical care and counselling. GPs value mentoring, peer-support, and experiential learning alongside EoLC specialists over formal training.

Keywords: General Practice, Primary Health Care, Education, End of Life Care, Palliative Care, Qualitative Research

Background General Practitioners (GPs) and other community healthcare providers are vital to the delivery of end of life care (EoLC) internationally, assuming overall responsibility for direct patient care, providing generalist palliative care, ensuring co-ordination and communication with colleagues and social care providers, and preventing unnecessary hospital admissions [1–4]. In * Correspondence: lucy.selman@bristol.ac.uk 1 University of Bristol, School of Social and Community Medicine, University of Bristol, 39 Whatley Road, Bristol BS8 2PS, UK Full list of author information is available at the end of the article

England, where the current study was conducted, GPs’ responsibilities now include commissioning of services in local communities. Working in Clinical Commissioning Groups (CCGs) with other practices, GPs are key players in making the wider systemic changes required to improve EoLC [5] and help shift care from hospitals to the community, in line with patient wishes [6, 7].

However, there is evidence that GPs encounter challenges in providing EoLC and that the quality of EoLC

by GPs can be problematic [8–11]. A recent survey of bereaved relatives of 596 people who died of cancer in London, UK, found that GPs received significantly less

© The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Pearson et al. BMC Palliative Care (2017) 16:14 DOI 10.1186/s12904-017-0185-0

RESEARCH ARTICLE

Open Access

Measuring geographical accessibility to palliative and end of life (PEoLC) related facilities: a comparative study in an area with well-developed specialist palliative care (SPC) provision Clare Pearson1, Julia Verne2, Claudia Wells3, Giovanna M. Polato4, Irene J Higginson1 and Wei Gao1*

Abstract Background: Geographical accessibility is important in accessing healthcare services. Measuring it has evolved alongside technological and data analysis advances. High correlations between different methods have been detected, but no comparisons exist in the context of palliative and end of life care (PEoLC) studies. To assess how geographical accessibility can affect PEoLC, selection of an appropriate method to capture it is crucial.

We therefore aimed to compare methods of measuring geographical accessibility of decedents to PEoLC-related facilities in South London, an area with well-developed SPC provision.

Methods: Individual-level death registration data in 2012 (n = 18,165), from the Office for National Statistics (ONS) were linked to area-level PEoLC-related facilities from various sources. Simple and more complex measures of geographical accessibility were calculated using the residential postcodes of the decedents and postcodes of the nearest hospital, care home and hospice. Distance measures (straight-line, travel network) and travel times along the road network were compared using geographic information system (GIS) mapping and correlation analysis (Spearman rho).

Results: Borough-level maps demonstrate similarities in geographical accessibility measures. Strong positive correlation exist between straight-line and travel distances to the nearest hospital (rho = 0.97), care home (rho = 0.94) and hospice (rho = 0.99). Travel times were also highly correlated with distance measures to the nearest hospital (rho range = 0.84–0.

88), care home (rho = 0.88–0.95) and hospice (rho = 0.93–0.95). All correlations were significant at p < 0.001 level.

Conclusions: Distance-based and travel-time measures of geographical accessibility to PEoLC-related facilities in South London are similar, suggesting the choice of measure can be based on the ease of calculation.

Keywords: Palliative care, Geographical accessibility, Methods, Health services, Accessibility

Background Conceptually, accessibility can be difficult to define. Geographical accessibility has long been used as one dimension of overall accessibility (in addition to availability, affordability and acceptability) [1]. Being physically able to access healthcare services (proximity and/or being able to travel) is an important human right and equity of access * Correspondence: wei.gao@kcl.ac.uk 1 King’s College London, Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, Bessemer Road, London SE5 9PJ, UK Full list of author information is available at the end of the article

to healthcare is optimal, including palliative and end of life care (PEoLC) related services. Geographical accessibility to healthcare has been investigated in a wide range of health services research, including accessing primary healthcare facilities [2, 3] examining colorectal cancer survival [4] and renal replacement therapy services [5].

Increasingly sophisticated methods have been utilised to calculate geographical accessibility to services as technical advancements in data management and more advanced Geographic Information Systems (GIS) techniques have developed. Each method requires assumptions about

© The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

689015 research-article2017

PMJ0010.1177/0269216316689015Palliative MedicineGroeneveld et al.

Review Article

Funding models in palliative care: Lessons from international experience

Palliative Medicine 2017, Vol. 31(4) 296­–305 © The Author(s) 2017

https://doi.org/10.1177/0269216316689015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216316689015 journals.sagepub.com/home/pmj

E Iris Groeneveld1, J Brian Cassel2, Claudia Bausewein3, Ágnes Csikós4, Malgorzata Krajnik5, Karen Ryan6, Dagny Faksvåg Haugen7,8, Steffen Eychmueller9, Heike Gudat Keller10, Simon Allan11, Jeroen Hasselaar12, Teresa García-Baquero Merino13, Kate Swetenham14, Kym Piper15, Carl Johan Fürst16 and Fliss EM Murtagh1

Abstract Background: Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them.

Aim: To assess national models and methods for financing and reimbursing palliative care.

Design: Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms.

Results: Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: • Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision.

• Funding is frequently characterised as a mixed system of charitable, public and private payers.

• The basis on which providers are paid for services rarely reflects individual care input or patient needs.

Conclusion: Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest.

Keywords Financing, reimbursement mechanisms, palliative care, hospice, health care systems

1 Department

of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King’s College London, London, UK 2 School of Medicine, Virginia Commonwealth University, Richmond, VA, USA 3 Department of Palliative Medicine, Munich University Hospital, Ludwigs-Maximilians-University Munich, Munich, Germany 4 PTE ÁOK Családorvostani Intézet, Hospice-Palliativ Tanszék, Pécs, Hungary 5 Department of Palliative Care, Collegium Medicum in Bydgoszcz, Nicolaus Copernicus University, Bydgoszcz, Poland 6 Saint Francis Hospice and Mater Hospital, Dublin, Ireland 7 Regional Centre of Excellence for Palliative Care, Haukeland University Hospital, Bergen, Norway 8 Department of Clinical Medicine K1, University of Bergen, Bergen, Norway 9INSELSPITAL – University Hospital Bern, Bern, Switzerland 10Klinik für Palliative Care, Hospiz Im Park, Arlesheim, Switzerland

11 Arohanui

Hospice, Palmerston North, New Zealand of Anesthesiology, Pain and Palliative Care, RadboudUMC, Nijmegen, The Netherlands 13 Viceconsejería de Asistencia Sanitaria, Consejería de Sanidad de Madrid, Universidad Católica San Antonio de Murcia, Murcia, Spain 14 Southern Adelaide Palliative Services, Southern Adelaide Local Health Network, Adelaide, SA, Australia 15 Finance & Corporate Services, South Australia Health, Adelaide, SA, Australia 16 Palliativa Utvecklingscentrum, Lund University and Region Skåne, Lund, Sweden 12 Department

Corresponding author: Fliss EM Murtagh, Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King’s College London, Bessemer Road, London SE5 9PJ, UK. Email: Fliss.murtagh@kcl.ac.uk

679929 research-article2016

PMJ0010.1177/0269216316679929Palliative MedicineBrighton et al.

Original Article

‘End of life could be on any ward really’: A qualitative study of hospital volunteers’ end-of-life care training needs and learning preferences

Palliative Medicine 1­–11 © The Author(s) 2017

Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216316679929 pmj.sagepub.com

Lisa Jane Brighton1, Jonathan Koffman1, Vicky Robinson1, Shaheen A Khan2, Rob George1,2,3, Rachel Burman1,4 and Lucy Ellen Selman1,5

Abstract Background: Over half of all deaths in Europe occur in hospital, a location associated with many complaints. Initiatives to improve inpatient end-of-life care are therefore a priority. In England, over 78,000 volunteers provide a potentially cost-effective resource to hospitals. Many work with people who are dying and their families, yet little is known about their training in end-of-life care.

Aims: To explore hospital volunteers’ end-of-life care training needs and learning preferences, and the acceptability of training evaluation methods.

Design: Qualitative focus groups.

Setting/participants: Volunteers from a large teaching hospital were purposively sampled.

Results: Five focus groups were conducted with 25 hospital volunteers (aged 19–80 years). Four themes emerged as follows: preparation for the volunteering role, training needs, training preferences and evaluation preferences. Many described encounters with patients with life-threatening illness and their families. Perceived training needs in end-of-life care included communication skills, grief and bereavement, spiritual diversity, common symptoms, and self-care. Volunteers valued learning from peers and end-of-life care specialists using interactive teaching methods including real-case examples and role plays. A chance to ‘refresh’ training at a later date was suggested to enhance learning. Evaluation through self-reports or observations were acceptable, but ratings by patients, families and staff were thought to be pragmatically unsuitable owing to sporadic contact with each.

Conclusion: Gaps in end-of-life care training for hospital volunteers indicate scope to maximise on this resource. This evidence will inform development of training and evaluations which could better enable volunteers to make positive, cost-effective contributions to end-of-life care in hospitals.

Keywords Volunteers, hospital volunteers, qualitative research, education, terminal care, palliative care

What is already known about the topic?

•• Although most people use inpatient services in the last year of life, and over half of all deaths occur in hospitals, quality of end-of-life care here remains sub-optimal.

•• Hospital volunteers contribute hours of their time free of charge, across wards that include elderly patients and those with life-threatening illness, and their families.

•• Little evidence exists to inform volunteers’ training in end-of-life care.

1 King’s

College London, Cicely Saunders Institute, Department of Palliative Care, Policy, and Rehabilitation, London, UK 2 Guy’s and St Thomas’ NHS Foundation Trust, London, UK 3 St Christopher’s Hospice, London, UK 4 King’s College Hospital NHS Foundation Trust, London, UK 5 Bristol Randomised Trials Collaboration, School of Social and Community Medicine, University of Bristol, Bristol, UK

Corresponding author: Lisa Jane Brighton, Cicely Saunders Institute, King’s College London, Bessemer Road, London SE5 9PJ, UK. Email: lisa.brighton@kcl.ac.uk

Patient DOI 10.1007/s40271-017-0224-1

ORIGINAL RESEARCH ARTICLE

Development of a Patient-Reported Palliative Care-Specific Health Classification System: The POS-E Mendwas Dzingina1 • Irene J. Higginson1 • Paul McCrone2 • Fliss E. M. Murtagh1

The Author(s) 2017. This article is published with open access at Springerlink.com

Abstract Background Generic preference-based measures are commonly used to estimate quality-adjusted life-years (QALYs) to inform resource-allocation decisions. However, concerns have been raised that generic measures may be inappropriate in palliative care.

Objective Our objective was to derive a health-state classification system that is amenable to valuation from the tenitem Palliative Care Outcome Scale (POS), a widely used patient-reported outcome measure in palliative care.

Methods The dimensional structure of the original POS was assessed using factor analysis. Item performance was assessed, using Rasch analysis and psychometric criteria, to enable the selection of items that represent the dimensions covered by the POS. Data from six studies of patients receiving palliative care were combined (N = 1011) and randomly split into two halves for development and validation. Analysis was undertaken on the development data, and results were validated by repeating the analysis with the validation dataset.

Results Following Rasch and factor analyses, a classification system of seven items was derived. Each item had two to three levels. Rasch threshold map helped identify a set of

14 plausible health states that can be used for the valuation of the instrument to derive a preference-based index.

Conclusion Combining factor analysis and Rasch analysis with psychometric criteria provides a valid method of constructing a classification system for a palliative carespecific preference-based measure. The next stage is to obtain preference weights so the measure can be used in economic evaluations in palliative care.

Key Points for Decision Makers We propose a new palliative care health-state classification system termed Palliative Care Outcome Scale (POS)-E. POS-E classifies palliative care states as a combination of seven dimensions.

The dimensions are pain, other symptoms, anxiety, depression, family anxiety, feeling good about oneself and practical matters.

1 Introduction Electronic supplementary material The online version of this article (doi:10.1007/s40271-017-0224-1) contains supplementary material, which is available to authorized users. & Mendwas Dzingina Mendwas.dzingina@kcl.ac.uk 1

Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King’s College London, Denmark Hill, London SE5 9PJ, UK

2

King’s Health Economics, King’s College London, De Crespigny Park, Denmark Hill, London SE5 8AF, UK

Economic evaluations are performed to inform the allocation of resources between competing healthcare interventions. A commonly used method is cost-utility analysis, which compares interventions in terms of their cost per quality-adjusted life-years (QALYs) gained. The QALY combines life expectancy (in years) and quality of life (QOL; expressed in the form of ‘health state values’) into a single metric based on people’s preferences [1]. The QOL portion is estimated by assigning a numerical value to each health state experienced by a person on a scale ranging

JOURNAL OF PALLIATIVE MEDICINE Volume 20, Number 4, 2017 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2016.0525

Letters to the Editor

Outcome Measurement for Children and Young People Richard Harding, BSc, MSc, DipSW, PhD,1 Joanne Wolfe, MD, MPH,2 and Justin N. Baker, MD3

To the Editor: We read with great interest the recent Editorial in the Journal of Palliative Medicine that concluded ‘‘Patientreported outcomes matter—let us weave them into every service so that we understand exactly how we are improving every person’s life’’.1 Interestingly, this was published at the same time as a systematic review of outcome measures in pediatric palliative care, which concluded, ‘‘There is currently no ‘ideal’ outcome assessment measure for use in pediatric palliative care’’.2 The lack of an appropriate tool is a fundamental challenge when attempting to evaluate the impact of care. The authors of the review of pediatric measures rightly highlight the importance of developing and validating a tool that is relevant to the diverse range of conditions and problems that are typically seen in palliative care services for children and young people.

To address the lack of a measure, we note a series of additional population-specific methodological challenges that must be considered. First, a tool should not focus on end of life as increased survival has led to disease trajectories for children that are characterized by slow deterioration and high dependency and disability. In terms of children’s ability to participate in patient-centered outcome measures (PCOMs), we do not yet know the optimal length, format, or whether optional items are needed for subpopulations. These issues of acceptability form a key aspect of validity, and any tool must be appropriate to the child’s developmental phase as opposed to chronological age, complexity of language, and communication needs. Social and educational engagement problems are also potentially radically different from those outcome measures from adults, and include play needs and sibling support.

PCOMs have paid inadequate attention to children with serious illness and their parents. This may be a direct result of the complexity of the science and implementation, including challenging issues of consent and proxy validity between children and parents.

It is timely to develop research protocols that can address these challenges, using the highest scientific principles of tool validation, while ensuring attitudes toward the use of a resulting PCOM are optimized by engaging professionals in the

planning stage. Involvement of all key end users (children, families, and providers) is essential to ensure that clinically useful PCOMs can become routinely used in pediatric palliative care3 so that access, equity, and quality of care are optimized. As the number of children needing palliative care increases, the need for a valid and useful tool is urgent. Advances in the development and validation of outcome measures for children and their families accessing palliative care have been made in sub-Saharan Africa.4 South–North partnerships should be established to share learning and inform tool validation in high-income countries. We recommend core times are proposed wherever possible to facilitate international collaboration and comparison of outcome data.

References

1. Currow DC, Davidson PM, Higginson IJ: ‘‘Outcomes’’ is not an oxymoron in Hospice/Palliative care. J Palliat Med 2016;19:1128–1129.

2. Coombes LH, Wiseman T, Lucas G, et al.: Health-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use. Palliat Med 2016;30:935–949.

3. Antunes B, Harding R, Higginson IJ, EUROIMPACT: Implementing patient-reported outcome measures in palliative care clinical practice: A systematic review of facilitators and barriers. Palliat Med 2014;28:158–175.

4. Downing J, Atieno M, Powell RA, et al. Development of a palliative care outcome measure for children in sub-Saharan Africa: Findings from early phase instrument development.

Eur J Palliat Care 2012;19:4.

Address correspondence to: Richard Harding, BSc, MSc, DipSW, PhD Department of Palliative Care Policy and Rehabilitation King’s College London Cicely Saunders Institute Bessemer Road London SE5 9PJ United Kingdom of Great Britain and Northern Ireland E-mail: richard.harding@kcl.ac.uk

1 Department of Palliative Care, Policy and Rehabilitation, King’s College London, Cicely Saunders Institute, London, United Kingdom of Great Britain and Northern Ireland.

2 Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts.

3 Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children’s Research Hospital, Memphis, Tennessee.

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