Current research 2015 2016 kc ivz

CURRENT RESEARCH 2015-2016

CENTRE FOR INNOVATION IN HEALTHCARE

CONTENT

RESEARCH GROUP CHRONIC ILLNESSES

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RESEARCH GROUP DEMAND-DRIVEN CARE

29

RESEARCH GROUP LIFESTYLE AND HEALTH

45

RESEARCH GROUP PROCESS INNOVATION IN PHARMACEUTICAL CARE

79

RESEARCH GROUP SPEECH AND LANGUAGE THERAPY

99

OTHER

113

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PREFACE

As Centre for Innovation in Healthcare, we proudly present our research projects running in the academic year 2015 - 2016. First and foremost, we present our work to lecturers and students of our Faculty of Health. But no less importantly, we present it to others who are interested in our research.

This digital publication is the second edition of the compendium of research projects. It is updated annually.

Reading the abstracts, you will find a rich palette of research studies that all focus on promoting the autonomy of people, in their roles as citizen, patient, and / or caregiver. Promoting autonomy is at the core of our mission.

To promote a common language for health and for healthcare, we work within the knowledge frame of the International Classification of Functioning, Disability and Health, known as ICF. You’ll find research studies within the areas of functions and structures, activities and participation in society, the physical and social environment, and personal factors.

In addition to the ICF, as researchers, we also use a common methodological model. This is the model of the Medical Research Council: the MRC model.

Traditionally, in health research, an emphasis on impact studies is maintained.

We, on the other hand, regard the development and implementation of interventions as equally important for healthcare practice. The aim of our research projects is to be meaningful for practice. To achieve this, questions and demands from professional practice are at the base of our research; the results of our projects are implemented in that same practice. Working with the MRC model provides for this.

This compendium of research studies is organized per research group. On top of that, there is an extra category, outside existing research groups, but within our research centre. Another way to approach the contents of this publication is browsing it by researcher name. A glossary can be found in the back.

The abstracts might be read from different angles. Readers might be interested in a specific topic, or they might have questions about an adjacent area of research, and find answers or examples in the research approach of certain projects. Both lecturers and students are invited to look for a possibility to participate in a research study. Of course, you may also have wholly different motives for reading this publication, and whatever they are, you are wholeheartedly invited to find any opportunities and possibilities our compendium might have to offer you.

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With this digital book of abstracts, we aim to create ever more ties and links between education and research, both within and outside our faculty. Our hope is that reading the abstracts will bring up ideas for cooperation. I wish you fruitful and lasting collaborations with our research centre.

Roelof Ettema PhD, senior lecturer and researcher Institute of Nursing Studies and Research group Chronic Illnesses, Centre for Innovation in Healthcare

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RESEARCH GROUP CHRONIC ILLNESSES Professor Marieke Schuurmans

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The research program of the chair Chronic Illnesses focuses on prevention and early detection of preventable or reducible generic effects of disease and treatment that affect daily functioning. Daily functioning is defined in terms of activities of daily living (ADL), such as washing oneself, dressing, eating, and exercise. But it is also defined in terms of instrumental activities of daily living (IADL). These include the activities that a person can carry out, such as independent errands, phone calls, dealing with money, and travel. Research is being conducted into loss of daily functioning and factors that induce loss of daily functioning, such as pain, infections, depression and delirium. Optimum daily functioning is the main outcome measure. Self-management and autonomy are increasingly in the centre of attention. Research is not limited to a specific domain or a specific disease patient category. Within the research, there is relatively much attention for older people with complex problems because of multimorbidity. The general research programme is made up by two lines of research.

Prevention of loss of daily functioning due to ‘Ageing & chronic conditions’ This line of research focuses on preventing loss of daily functioning due to ageing and chronic conditions. Within this line, research is primarily directed at people who live at home and are supported by family, primary care and home care nursing. The relevant functionality problems stem from chronic (multi) morbidity issues as polypharmacy. Self-management support is an important aspect within this research.

Prevention of loss of daily functioning due to ‘Acute events’ The second strand is aimed at preventing loss of daily functioning due to acute events. This line of research is primarily aimed at people who are hospitalised, and are at increased risk of loss of daily functioning. People's problems stem from multimorbidity or cardiovascular disease, including stroke.

Besides these two lines, a third line of research is developing, aimed at professional development and leadership within the nursing profession.

The research of the chair is conducted within the framework of the World Health Organisation International Classification of Functioning (ICF). It follows the Medical Research Council’s approach for development and testing of complex interventions. The research is initiated and conducted in close collaboration with patients, professionals and students. Results aim at improving clinical practice, enabling nurses to realize evidence-based effective patient outcomes.

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RESEARCH GROUP CHRONIC ILLNESSES Preventing loss of physical functionality

Author: Title:

Provisional end date:

Debbie ten Cate RN MSc Early nursing nutrition intervention in older community dwelling people indicated for hospital admission 2019

Background and research question The prevalence of malnutrition in Dutch older community dwelling people is 10% and in Dutch hospitals 21,8%. The risk of malnutrition during hospitalisation is even higher because of an increased energy intake and decreased appetite due to the hospitalisation. Malnutrition is a frequent and serious problem in older people. It is associated with negative outcomes such as infections, diseases and low functional status. Therefore it is important to prevent malnutrition when older community dwelling people are indicated for hospital admission, hospitalised or discharged from hospital. For this purpose, an optimal nutritional status is important. This takes time to achieve. Homecare nurses can make an essential contribution to this. They can provide that older community dwelling people in the period before and after hospital admission at home achieve an optimal nutritional status to prevent malnutrition. An effective nursing nutrition intervention could be used. However, evidence is lacking for such an intervention in the preadmission and post-admission period.

Design/methods Study 1: interventions to prevent malnutrition in older community dwelling people indicated for hospital admission or recently discharged from hospital: a systematic review.

Objective: in order to establish a base for developing an effective early nursing nutrition intervention, existing evidence in literature should be elucidated.

Study design: following the PRISMA statement guidelines, the literature will be systematically reviewed and critically appraised using the Cochrane appraisal lists and graded using the GRADE-system.

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Study 2: development of an early nursing nutrition intervention in older community dwelling people indicated for hospital admission or recently discharged from hospital: development study following phase 1 of the MRC guideline.

Objective: to develop an early nursing nutrition intervention to improve the nutritional condition of older community dwelling people indicated for hospital admission or recently discharged from hospital.

Study design: in a team of researchers, nurses, dieticians and patients, the revised guidelines for developing and evaluating complex interventions of the New Medical Research Council (MRC) will be followed, including identifying existing evidence, identifying and developing theory, and modelling the process and outcomes.

Study 3: feasibility of an early nursing nutrition intervention in older community dwelling people indicated for hospital admission or recently discharged from hospital: feasibility study following phase 2 of the MRC guideline.

Objective: to test the early nursing nutrition intervention in older community dwelling people indicated for hospital admission or recently discharged from hospital on its feasibility to detect possible problems with acceptability, compliance and delivery.

Study design: following the MRC guidelines concerning testing the feasibility regarding testing procedures, estimating recruitment and retention, and determining the sample size.

Study 4: effectiveness of an early nursing intervention in older community dwelling people indicated for hospital admission or recently discharged from hospital: effect study following phase 3 of the MRC guideline.

Objective: to investigate the effectiveness of an early nursing nutrition intervention to improve the nutritional condition in older community dwelling people indicated for hospital admission or recently discharged from hospital.

Study design: randomised controlled trial design.

Main results to date We are currently conducting study 1, the systematic review.

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RESEARCH GROUP CHRONIC ILLNESSES Preventing loss of physical functionality

Author: Title:

Provisional end date:

Roelof Ettema PhD The PREDOCS-programme for predicting and preventing postoperative decline in older cardiac surgery patients: A stepped wedge monitored implementation study June 2016

Background & research question Given the growing number of vulnerable, older cardiac surgery patients, the preadmission PREDOCS programme was developed to reduce the incidence of postoperative complications. Also, the programme appeared feasible for patients and nurses to use in clinical practice, and it is estimated that its use is already cost effective when only 0.6% to 1.6% of the patients would benefit.

The programme should be built into the hospital’s cardiac surgery pathway or applied in home care. In this study, the clinical effects of this complex multicomponent intervention will be evaluated.

Design/methods In a stepped wedge design in approximately 2,000 patients of 65 years and older in six cardiac surgery centres, together with a home care organisation in the Netherlands, the PREDOCS programme is tested on its clinical effect. The six cardiac surgery centres will be randomly assigned to a control or an intervention team, using random numbers. Patients in the intervention centres will receive usual care and the PREDOCS programme. Patients in the control centres will receive usual care only. The PREDOCS programme is delivered by a nurse in a consult at home or in the hospital outpatient department four to two weeks before the hospital admission.

Main results to date It is expected that the current incidences of postoperative occurring delirium approximately 18%, depression 15%, pressure ulcer 11%, and infection 8%, can at least be reduced by respectively 5%, 4.5%, 4% and 3.5%.

Following the intention to treat principle, multilevel regression analysis will be performed, adjusted for baseline differences between the groups. To evaluate 12

the costs, the total invested capacity of nurses will be measured, and costs will be calculated and compared with health revenues in all patients in the intervention centres, by calculating the decrease in care demand with the accompanying costs saving.

Discussion Older patients should be adequately prepared before an elective hospital admission. Despite the fact that this is in accordance with the fundamentals of nursing, this notion is unfortunately not common in nursing practice.

A monitored implementation trial with a stepped wedge design is an adequate approach with relatively low costs for measuring the effect of the PREDOCS programme. Such a design is particularly relevant in cases where the intervention will likely do more good than harm. In such a study with a complex design, careful planning and monitoring are required in order to ensure that a robust evaluation of the effectiveness of the intervention is undertaken. This will support the notion that older patients should be adequately prepared before an elective hospital admission.

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RESEARCH GROUP CHRONIC ILLNESSES Preventing loss of physical functionality

Author: Title: Provisional end date:

Roelof Ettema PhD Individual healthcare needs and capabilities of older people living in the community December 2018

Background & research question There is a lack of knowledge in the home healthcare setting about individual healthcare needs of older people and healthcare needs in this population, based on the following profiles: vital older people, older people with psychosocial problems, older people with problems in physical health and mobility, older people with complex problems and frail older people. Therefore, we aim to explore the individual needs of older people living in a community and the capabilities of older people that influence their healthcare situation, quality of life and well-being.

Design/methods In a retrospective study design, a phenomenon of interest will be explored in the individual healthcare needs and the capabilities of 7,394 older community dwelling people. The research will explore the full nature of these phenomena to witch it is related and the explanations of the dependent and independent variables. The data that will be used is collected in the Utrecht region and the northern part of the Netherlands, through the triage instruments Groningen Frailty Instrument, INTERMED and Groningen Wellbeing Instrument.

Main results to date In this study the data of the two triage instruments will be used to explore the unmet healthcare needs and capabilities that are needed to provide a better experienced healthcare situation and wellbeing. For supporting a proactive primary nursing care, individual healthcare needs and capabilities patterns of older people living in the community will be identified.

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Discussion In a proactive primary nursing care, the focus of care is on prevention that is either disease-based, function-based or care-based, in such a way that it encourages self-management by involving patients in their own care process, demand driven care and empowering of patients. For redefinition of care in primary nursing care, it is important to know the needs and the potential functionings of older people, to avoid adverse healthcare outcomes that can disturb the equilibrium and cause a change in priorities of needs in the community dwelling older people.

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RESEARCH GROUP CHRONIC ILLNESSES Preventing loss of physical functionality

Author: Title:

Provisional end date:

Sigrid Mueller-Schotte OD MSc Old and well functioning: determinants of (visual) functioning and preservation of functioning in the elderly (PROFIEL /VFPROFIEL) Summer 2016

Background Being able to function and live independently at older age is an important factor in keeping good quality of life (QoL) and vitality. Vision affects several domains of functioning, such as mobility, the ability to perform (instrumental) activities of daily living ((I)ADL)), mental and cognitive state, and QoL. The process of gradual deterioration of the (visual) function is often not detected but considered a normal ageing process. However, early detection and timely treatment can delay the progression of disease, restore (visual) function, or affect cognitive abilities, thus preserving (vision-related) QoL (VRQoL). The aim of the PROFIEL/VF-PROFIEL study is to gain insight in factors (visual and non-visual) contributing to physical, cognitive, and psychosocial functioning in the elderly, to enable them to stay independent.

Design/methods The PROFIEL-study has a longitudinal study design. Information was collected on medical history, lifestyle, somatic, cognitive, functional and psychosocial status in 1999-2002 and 2010-2011. The vision-related study (VF-PROFIEL) is an extension of the PROFIEL-study with a cross-sectional design.

Research question 1: Study design: Population: Study parameters/endpoints Endpoint:

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Ocular straylight: a determinant of QoL in the elderly?

A cross-sectional population-based study.

120 men and women aged 50-89 years.

VRQoL measured by the National Eye Institute Visual Functioning Questionnaire (NEI-VFQ25/NL).

Main study parameter: Data analysis:

Results: Research question 2: Study design: Population: Study parameters/endpoints Endpoint: Main study parameter: Data analysis:

Results: Research question 3: Study design: Population:

Study parameters/endpoints Endpoint: Main study parameter: Data analysis:

Results:

Ocular straylight (Oculus C-Quant instrument).

Linear regression models will be used to assess the association between SL modelled continuously and cut off at the recommended fitness-to-drive value (SL ≼ 1.4 log(s)) and VRQoL, adjusted for confounders.

Pending.

Visual functioning and cognitive activity engagement in community-living elderly A cross-sectional population-based study.

120 men and women aged 50-89 years.

Florida Cognitive Activity Scale (FCAS) and Mini-Mental State Examination (MMSE) Visual acuity, contrast sensitivity, and visual function (VF) compound score.

Linear and logistic regression models, adjusted for confounders, will be used to assess the association between VF and FCAS/MMSE. Pending.

Risk factors of disability and the relation with limitations in IADL after 10 years A longitudinal population-based study.

537 men and women aged 40 to 79 years at baseline.

Number of limitations in IADL and mobility performance Risk factors of disability.

Multivariable (Poisson) regression and logistic regression models, adjusted for confounders, will be used to assess the association between IADL/mobility performance.

Pending

Discussion: Our study results contribute to elucidating the epidemiology of functional decline and provide the opportunity for a multidisciplinary care approach for older adults. They will provide starting points for interventions to preserve visual function, cognition, mobility and (I)ADL. All domains are equally important to maintain self-management, self-efficacy, and autonomy at older age.

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RESEARCH GROUP CHRONIC ILLNESSES Preventing loss of physical functionality

Author: Title:

Nienke Bleijenberg RN PhD Prevention of functional decline in older people in primary care

Background Providing optimal care to the increasing number of older people with complex care needs is a major challenge in primary care. Demographic and societal changes require a transition towards a proactive and preventive primary care approach.

The most important goal for older people is to maintain independence as long as possible. The ability to perform activities of daily living (ADLs), such as bathing or dressing, and instrumental ADLs (IADLs), like shopping and managing finances, are considered essential for remaining independent and autonomous. To date, successful preventive primary care programmes to prevent or preserve daily functioning in older people are lacking.

Design/methods This research line focuses on three topics that are closely related to each other: 1. The development of multicomponent nurse-led interventions to prevent functional decline in older people. The Medical Research Council (MRC) framework for the development and evaluation of complex interventions is used as guidance.

2. The epidemiology and risk factors of functional decline in older people.

3. Unravelling the effectiveness of nurse-led primary care programmes.

Main results to date 1. A comprehensive multicomponent nurse-led intervention programme with the aim to preserve functional decline in older people in primary care was evaluated in a three-armed cluster randomised trial. Over 3,000 older people (aged 60+), and ≼ 350 caregivers participated. At one-year follow18

up, people in the intervention group showed less decline in daily functioning compared to people in the control group. The programme was well received by older people, general practitioners and nurses. Important factors for appreciation of the care were the relationship with the nurse, timing and tailoring of the care. The training of the nurses is embedded in the regular education programme for primary care nurses.

2. In an observational cohort study among 805 older people (mean age 75), we investigated the onset and development of (I)ADLs, and examined the impact of chronic conditions on the each (I)ADL. Household, traveling and shopping had high prevalence, whereas using the telephone, managing medication, and managing finances had very low prevalence and low progression with increasing age. The impact of three or more chronic conditions on all (I)ADLs was substantial.

3. This study will compare the content of several (nurse-led) primary care programmes aimed at maintaining independent living in older adults. The objective is to elucidate the mechanism and components that are most likely to be successful in this type of care programmes. The content of the care plans as well as the training of the nurses will be compared in relation to the outcome of the trial results.

Discussion To provide efficient and evidence-based care to the rapidly increasing group of older people, effective nurse-led primary care interventions are needed to preserve daily functioning. Future studies should focus on the question how to identify the target population who are most likely to benefit, especially those who are frail, those who have complex care needs and those who are at high risk of adverse events. Nurses should be adequately prepared to provide care to this increasing population in primary care.

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RESEARCH GROUP CHRONIC ILLNESSES Rehabilitation after a stroke

Author: Title: Provisional end date:

Mariska van Dijk MSc Detection of depression in the early stage of stroke: opportunities in nursing care September 2016

Background & research question In the Nursing Rehabilitation Guideline Stroke (NRGS), 21 recommendations focus on early screening, detection, and nursing interventions for post stroke depression (PSD). However, implementing clinical practice guidelines into clinical practice often proves difficult. Nurses state that they need recommendations provided in a more practical form to be able to use them in daily care. Therefore, a toolkit including screening of PSD and nursing interventions was developed and tested on its feasibility. However, no standardised instrument is available for screening for depression in patients with communicative impairments after stroke. After careful review of the literature, the Signs of Depression Scale (SODS) was identified for the assessment of PSD in patients with communicative disorders. However, evidence for the psychometric properties of the SODS is lacking. Therefore, the psychometric properties of the SODS were investigated in the second study.

Design/methods Study 1: Detection of Depression in the Early Stage of Stroke: feasibility and sustainability of the Post Stroke Depression toolkit Study design: a concurrent embedded strategy of mixed methods, pre-test post-test design, in which qualitative data are embedded in a quantitative design.

Population: nurses working on the participating neurological wards.

Study parameters/endpoints The main study parameter: the percentage of nurses using the PSD-toolkit.

Secondary study parameters/endpoints: nurses' perceived barriers and facilitators to provide PSD care; the clinical utility of the PSD-toolkit; the level of team learning; the level of expertise of nurses concerning PSD. 20

Study 2: Detection of Depression in the Early Stage of Stroke: psychometric properties of the Signs of Depression Scale Study design: a cross-sectional multi-centre study, using a census approach.

Population: patients in the early stage post stroke admitted to neurological wards of a university hospital and two general hospitals and their proxies, as well as the nurses responsible for the care of the participating patients.

Study parameters/endpoints Index test: The Signs of Depression Scale revised (SODS-R).

Reference tests: 1. The Composite International Diagnostic Interview (CIDI) 2. The Barthel Index (BI) Main results to date Study 1: 150 nurses were included in the study. Data on the use of the PSD toolkit on 1,100 patients were collected, 30 nurses were interviewed, 3 focus groups were organised, patients’ perceptions on the PSD toolkit were investigated, and the use of the PSD toolkit in daily practice was examined by participating observation.

80% of the patients were screened on depression and interventions were deployed at an average of 67%.

- Data analysis in progress.

Study 2: 116 patients and 107 proxies were included.

- Data analysis in progress.

Article 1. Identifying depression post stroke in patients with aphasia: a systematic review of the reliability, validity and feasibility of available instruments - Provisionally accepted May 2015 Article 2. The Dutch Version of the Signs of Depression Scale: Validity and Reliability in Patients with Aphasia after Stroke - Under review 21

RESEARCH GROUP CHRONIC ILLNESSES Optimizing self-management

1st author: Title:

Provisional end date:

Yvonne Korpershoek RN MSc Development of M-ACZiE: Mobile Action plan to enhance self-management and early detection of exacerbations in patients with COPD October 2018

Background & research question COPD is one of the most common chronic diseases and the fourth leading cause of mortality worldwide. The natural course of COPD is interrupted by exacerbations: a sustained worsening of patients’ baseline symptoms, which are beyond normal day-to-day variability, and may warrant medical treatment.

Exacerbations have a negative impact on quality of life. They are associated with accelerated lung function decline and increased mortality. Selfmanagement skills are important to detect exacerbations in an early stage and take prompt actions to reduce the impact of exacerbations. However, detection of fluctuations in symptoms appears to be difficult for patients and results in inadequate reactions.

Supporting patients in early detection of exacerbations and teaching selfmanagement skills in the form of an action plan is proven to be an effective method to increase patients’ confidence and skills, resulting in a decrease of the acute impact of exacerbations. However, no effects on health related quality of life and healthcare utilisation were observed.

A more comprehensive strategy is needed to be able to manage different manifestations of exacerbations and fit patients’ needs, perceptions and capabilities towards exacerbation management. mHealth creates possibilities to add several accessible and essential elements to regular care and, subsequently, to target and tailor self-management interventions. A more individualised strategy is expected to be more effective on quality of life and healthcare utilisation.

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The primary objective is to develop a tailored mHealth intervention to improve self-management and early detection of exacerbations in patients with COPD (M-ACZiE). This intervention should be safe and patient friendly, should meet patients’ needs, perceptions and preferences, and is able to manage heterogeneity in exacerbations in/between patients.

Design/methods A user centred development design will be used for the development of MACZiE, being in accordance with the development-phase of the MRC framework. This phase is extended with building blocks as described in the model of Evidence Based Nursing Interventions. A literature review will be performed to identify strategies to reduce the impact of exacerbations. Since the patient’s experience plays an important role in the development phase, a problem-and-needs analysis will be performed with qualitative research methods. Individual in-depth interviews will be performed to identify patients’ perceptions, needs and capabilities with regard to self-management of exacerbations. Furthermore, focus group interviews will be organised to identify patient perceptions towards potential benefits and barriers of mHealth (TASTECONCEPT study). In addition, a current practice analysis will be performed to examine the value of the intervention in comparison with regular care. Finally, identified knowledge will be translated in target behaviours resulting in a first draft of the intervention. The development process is iterative. Several phases may be performed parallel in time and it may be necessary to return to previous steps based on the results.

Main results to date Literature review: currently, literature searches are performed and results are summarised. Results will be presented in the future.

TASTE-CONCEPT study: currently, individual in-depth interviews are performed and focus groups interviews with patients are organised. Results will be presented in the future.

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RESEARCH GROUP CHRONIC ILLNESSES Professional attitudes/leadership

1st author: Title: Provisional end date:

Jeroen Dikken RN MSc Development and validation of the Knowledge about Older Patients Quiz for nurses 1 September 2016

Background & research question: Literature shows that nurses have a knowledge deficiency about, and negative attitudes towards, older patients. Increasing nurses’ knowledge (part of attitudes) may affect hospital nurses’ attitudes and improve the quality of care provided to older patients. A first step towards this goal is understanding nurses’ current knowledge. This can be achieved by using a measurement instrument with good validity and psychometric properties. Previously developed instruments measuring nurses’ knowledge about older patients are considered outdated or too country specific. Moreover, some measure knowledge in combination with aspects such as opinions, beliefs and experience, instead of knowledge solely. Some do not include a patient focus or a caring perspective. Furthermore, a clear description of content development is often not provided, which is a serious omission in developing a valid measurement instrument. Last, psychometric testing was not performed at all, or using analysis techniques based on classical test theory, which has several limitations compared to the item response theory approach. Therefore, we chose to develop a new instrument, the Knowledge about Older Patients Quiz (KOP-Q) for nurses.

Design/methods Given the paucity of methodological rigor in the development of measurement instruments, the criteria as described in the Consensus-based Standards for the selection of health Measurement INstruments (COSMIN) were followed, providing transparency and reproducibility. First, the construct was defined using qualitative interviews with 7 experts, 10 nurse specialists and 5 older patients. Second, questions were conceptualised and generated from literature.

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Third, to reduce the number of questions, a Delphi round was organised with three nurse specialists and two researchers. Fourth, two pilot studies were established on readability (n=7 nurses) and face-validity (n=22 nurses). Fifth, content validity was assessed, using 12 nurse experts. Sixth, psychometric properties were assessed, using item response theory (IRT) with 107 first year students, 78 final year students, 148 registered nurses, and 20 nurse specialists representing a hypothetical wide range of knowledge. Last, classical test theory was applied to complement the results of IRT for use in clinical practice.

Main results to date Initially, 185 items were generated. After reduction of questions in the Delphi round, 52 items remained eligible for initial testing. No items were deleted after the readability and face-validity studies. Nine items were deleted as a result of low content validity. In the psychometric assessment, two items demonstrated ceiling effects and 11 items were found to measure different dimensions than knowledge solely. Item characteristics were assessed for the remaining 30 items.

All demonstrated good discrimination and difficulty parameters based on the fitted model. Analysis based on CTT provided understandable results for easier interpretation in clinical practice.

Discussion The KOP-Q is a psychometrically solid, brief and comprehensive (self-reported) measurement instrument to assess hospital nurses’ knowledge about older patients. The instrument can be implemented in clinical practice, education and in research. Cross-cultural validation will be assessed in a future study.

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RESEARCH GROUP CHRONIC ILLNESSES Professional attitudes/leadership

1st author: Title:

Provisional end date:

Pieterbas Lalleman MA BN RN Nurse middle managers’ daily work and the hindering and helping influences of nursing habitus on their leadership: an ethnographic case study in four hospitals in the Netherlands and the U.S. January 2016

Background & research question Nurse middle managers (NMMs) are considered key players in new models for improving the quality and efficiency of care. Due to their hybrid identity as ‘professional’ managers, they can relate to both managerial and professional worlds, and span boundaries between these worlds. In this study, we use Bourdieu’s theory of practice to describe NMM’s daily work in hospitals. By focusing on the notions of habitus, capital and field, we are able to demonstrate how nursing habitus as a system of dispositions and as an output of the professional socialisation of nurses in various fields influences NMMs’ daily work.

We also show how differences in fields, result in different appreciations of capital.

By using Bourdieu’s work, we are able to go beyond the individual competencies paradigm of nurse leadership and provide a more dynamic portrayal of NMMs’ work. Moreover, we are able to go beyond the ‘two window metaphor’, as we demonstrate that NMMs use a wide variety of dispositions rather than just limit themselves to ‘two windows’ of the professional and management world. Spread over various articles we address several research questions: 1. What is nursing habitus as seen in NMMs’ daily practices?

2. How does nursing habitus help or hinder the leadership of NMMs? 3. How is nursing habitus articulated and nursing leadership portrayed in the context of the four different sites?

4. How do NMMs experience being shadowed?

Design/methods This study is based on a Bourdieusian perspective and rooted in the Managerial Work and Behaviour Approach (MWB). In order to observe the dispositions of habitus in action in Magnet and non-Magnet hospitals in both the Netherlands

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and the U.S., a total of four in-depth ethnographic case studies were carried out. In total, 16 NNMs where shadowed (i.e. four at each site), a method common in MWB research which is particularly suitable for the in-depth study of organisational practices. The researcher closely followed each participant for four days and spent approximately 560 hours observing over a period of 19 months in 2010-2012.

Main results to date Eight dispositions of nursing habitus are found. They are caring, clinical, collegial, teaching, professional, scientific, administrative and control dispositions. Together, these dispositions play an important role in the behavioural repertoire of nurses and in the daily practices of nurse middle managers. The frictions and compromises between the dispositions varied at each site. The eight dispositions were not a static representation of habitus.

Some dispositions gave more capital than others, depending on the field they were articulated in. Answering the call for help, a manifestation of a caring, and a clinical disposition are seen as an essential elements of a nursing habitus and helped nursing leadership, as did a scientific disposition.

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RESEARCH GROUP DEMAND-DRIVEN CARE Professor Helianthe Kort

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Enabling people to live independently for as long as possible, to remain active, and to make their own healthcare decisions: this is the aim of the Demanddriven Healthcare research group.

The social necessity for this aim is clear: the number of ageing adults is increasing, capacity shortages are looming, and the cost of care is rising. But it is not simply a matter of money and capacity. Many elderly people and chronically ill people also actively prefer to live at home for as long as possible, and technology is enabling them to remain independent.

Technology The research group examines the opportunities and limitations of technology in healthcare. The model homes that the research group has realized together with the installation sector form a good example: www.technologiethuis.nu.

With some architectural and technological adjustments, people living with dementia, COPD, diabetes or limited vision can continue to live for longer in their own homes.

Task reallocation The research group is also investigating the role of the reallocation and delegation of tasks. Thanks to clear and unambiguous treatment procedures and the use of technology, new professions, such as that of the optometrist, are emerging. An optometrist is well positioned to take over some of the work of an ophthalmologist. Other examples include skin therapists, physician assistants, dental hygienists, and elderly care workers. These professionals cost less than physicians, but are able to deliver the same quality of care. All this means that task reallocation and technology are lowering healthcare costs.

Sharing knowledge The professor and the researchers of our research group share their knowledge with students, lecturers, researchers and policy makers. But also with professional practitioners working in healthcare institutions, in the technology sector (e.g. product designers), and within the building and installation sector.

This dialogue works in both directions: all these parties are also helping to work on our research. In addition, the research group incorporates its newly generated knowledge into teachings for bachelor’s and master’s students. The minor in Public Health Engineering and the annual summer course in Health and Engineering also serve as platforms for knowledge transfer. Research for the Demand Driven Care is structured accordingly to: 1. Autonomy and selfmanagement; 2. Smart Care; 3. Smart Business; and 4. Smart Environment.

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RESEARCH GROUP DEMAND-DRIVEN CARE Smart Care

1st author: Title: Provisional end date:

Marianne M. Sinoo MSc Visual functioning and light conditions for visual comfort in care facilities for older adults End of 2015

Background & research question The prevalence of visual impairment is high in people aged 50 years and above, according to the “2010 global data on visual impairment” (World Health Organisation). The highest estimated prevalence (> 40%) has been found in the subgroup of residents of nursing homes and residential care facilities. The roles of care professionals and the environment of the nursing home are described by the framework of the ICF (International Classification of Functioning, Disability, and Health).

Objective This project aims to investigate visual comfort, light conditions and the contribution of assessment of vision impairments. Integration of visual functioning is promoted by creating awareness of environmental variables by professional caregivers and by paying attention to information in client records.

Research questions • What are the light conditions in Dutch nursing homes?

• What age-related eye pathologies do optometrists report after eye examinations?

• What is the status of recording of information on visual problems or other eye-related data in client files?

• How do nursing home physicians practice eye care in Dutch nursing homes?

• How to assess the visual environment in nursing homes? Content validity of an observation tool for the indoor visual environment.

Design/methods Light conditions in Dutch nursing homes were assessed in terms of horizontal 32

and vertical illuminances and colour temperature. The measurements include the contribution of daylight and reflect the light situation as encountered at the moment of observation. In these nursing homes, 259 residents underwent an optometric examination, and their client records were analysed for information regarding visual functioning. The optometric examinations and recorded visual problems were combined with illuminance data.

Furthermore, a digital online survey was developed to describe the eye care activities of nursing home physicians. Additionally, an observation tool for assessing the indoor visual environment was developed and tested on content validity.

Main results to date Results showed that, in seven nursing home buildings, vertical illuminances in common rooms fell significantly below the 750 lx reference value in at least 65% of the measurements. Horizontal illuminance measurements in common rooms showed a similar pattern. A significant difference in colour temperature was found between recently constructed nursing homes and some older homes. Of the residents, 50% had problems with cataracts, retinal problems (21%), suspected glaucoma (13%), and other pathologies (16%). The information was not up-to-date in 56% of the records. The quality of light conditions in the nursing homes was low or moderate. 23%, 33% and 45% of nursing home physicians almost never or never examined the visual field, near vision and distant vision. The observation tool was validated by eight experts in eye care and building engineering, and structured into the following environmental parameters: ‘light’, ‘colour and contrast’, and ‘furnishing obstacles’.

Conclusion and discussion The studies showed that the light conditions in common rooms and corridors in all nursing homes were of low or moderate quality. In 50% of the referred residents, the main reason for referral was related to problems with cataracts, retinal problems (21%), suspected glaucoma (13%), or other pathologies (16%).

No information on visual functioning was found in the client records of 67% of residents who were referred by the optometrist for additional ophthalmologic consultation. Furthermore, nursing home physicians did not structurally examine relevant visual aspects.

Professional caregivers in the nursing home can be seen as an important environmental factor in diagnosing eye pathologies and controlling light conditions. The nursing home staff should be aware of visual problems. The developed observation tool might raise this awareness.

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RESEARCH GROUP DEMAND-DRIVEN CARE Smart Care

Author:

Title: Provisional end date:

Mirjam van Tilborg MSc BOptom FAAO PhD candidate, Cardiff University, School of Optometry and Vision Sciences Management pathways for dry eye disease in the Netherlands January 2017

Abstract The high impact on daily life from decreased visual functioning as a result of dry eye disease (DED) is the focus for this PhD. The Chronic Care Model will be used to position the roles of the general practitioner (GP), optometrist and occupational healthcare physician (OHP) in the management of a patient.

Background & research question DED is a multi-factorial chronic condition, with a strong impact on visual functioning and daily life. The condition is difficult to define in one symptom or to diagnose by current investigative techniques. Most importantly, no single treatment works for all.

GPs, optometrists and OHPs all have a role in the management of DED in primary healthcare.

Estimates for the worldwide prevalence of DED span a range from as low as 0.1% to as high as 33%. For the Netherlands, no prevalence data are available, partly due to a lack of consensus in defining DED. However, in 2013, there were 573,540 persons using prescribed artificial tear products, which can be used as an indication. Non-prescribed artificial tears by self-management were not taken into account.

The prescription of artificial tears, which is often inappropriate and ineffective, cost â‚Ź 26,635,300 in 2013, an increase of 35% since 2009.

The high impact on daily activities, particularly the impact on decreased visual functioning and the difficulties in accurate diagnosis between reported 34

symptoms and investigative technique outcome, prompted the research question: How can the diagnosis and management of visual functioning by DED patients be improved?

Design/methods Phase 1: dry eye management in primary healthcare in the Netherlands The design of this study was a cross-sectional, web-based survey that focused on the management of DED by GPs and optometrists. Areas of agreement between them in the definition and diagnosis of DED by symptoms were determined.

Phase 2: eye related problems in daily activities at work The design of this study was a cross-sectional, web-based survey that investigated the impact of (dry) eye problems at and near work with the use of VDU in office workers at three locations.

Phase 4: tear film characteristics and modern office environment This research will focus on the investigative techniques for DED and other eye related problems by office workers in a modern digital office and their perception of the quality of the indoor environment.

Phase 4: comparison of approach to DED by healthcare workers Using a Delphi method, this research will focus on the attitude of GPs, OHPs and optometrists towards the diagnosis and management of DED, with the aim of determining recommendations towards a chronic care model by defining the roles of these professionals in co-management of DED. Main results to date There are fundamental differences in the methods for diagnosis of DED, interpretation of dry eye-related symptoms and possible cause of developing dry eyes between the GPs and optometrists in the Netherlands, with a potential impact on consistency of patient care.

Article: Agreement in dry eye management between optometrists and general practitioners in primary healthcare in the Netherlands Mirjam M.A. van Tilborg, Paul J. Murphy, Katharine S.E. Evans Publication stage: In Press Corrected Proof Contact Lens and Anterior Eye Published online: April 18, 2015 35

RESEARCH GROUP DEMAND-DRIVEN CARE Smart Environment

1st author: Title: Provisional end date:

Emelieke Huisman MSc Creating a healthy nursing home environment via lighting interventions: a theoretical approach March 2015

Background & research question Dutch long-term care facilities (LTCFs) are investing in improvement of wellbeing of residents and in support for healthcare professionals (HP) in their daily tasks. LTCFs become more aware that technical and architectural solutions support activities of daily living and quality of life (QoL) of frail elderly. Also, they support and optimise the work process of HP and professionals in facility management. Light is one of the technical solutions that might support the QoL of frail elderly in LTCFs. Insufficient or inappropriate light exposure can disrupt standard human rhythms. This may result in adverse consequences for performance, safety and health. Several studies found that the amounts of light in LTCFs are insufficient to meet the visual needs of residents, and the majority of the measurements points fell below of the threshold of 750 lux. Given the influence of light on human health, lighting quality has become a complex issue.

The objective of this field study is to get insight into the amount of light in the common living room (CLR) in a long-term care facility (LTCF) in the Netherlands.

This insight is the departure point for investigating possibilities to enrich the current environment from a lighting perspective, in such a way that it supports activities of daily living and QoL of frail elderly.

Design/methods The study was carried out in two locations of a Dutch LTCF. Period of measurement was in April 2014 (location A) and in July 2012 (location B). Light measurements were performed in common living rooms (CLRs) of both locations. The point measurements included the horizontal and vertical illuminance (E) and the colour temperature of both daylight and electric lighting at different positions and for different orientations in the room. The horizontal 36

values were measured at table level (0.75m). The vertical values were measured at the same point at eye level of a sitting resident, in the viewing direction of the resident (1.10m).

To explore the possibilities for enhancing the light conditions in the CLR, four counselling sessions were organised by the project team, with the above mentioned light measurement outcomes as input. Three researchers, three staff members of the LTCF, and one facility manager participated in these counselling sessions. The sessions were used to evaluate and modify the proposal of a new light plan for the CLR. Main results to date In both situations, the values of 750 lux were mainly reached on measurements points relatively close to the window area. At positions further away from the window, the illuminance decreased (<1,5m).

The new light plan in the CLR of the LTCF is based on the light measurement outcomes and the counselling sessions.

Based on the outcomes the following starting points for the new light plan were formulated: • Sufficient light through the entire CLR to support daily activities such as reading and eating.

• The light system needs to be placed in a way that assures flexible use of the CLR. • Use of static lighting system that interacts with daylight through a sensor.

Discussion Sufficient or appropriate light exposure can support older residents in their daily tasks and reduce falls.

In expected concordance with earlier studies, the outcomes of the light measurements in this field study fell beneath the threshold of 750 lux for CLRs. Furthermore, the preliminary results of this field study showed that the improved light situation by a static lighting system might affect the QoL of frail elderly and support HP in their daily tasks. Further research is needed to investigate how the new lighting conditions contribute to the QoL in order to define light guidelines for LTCFs. 37

RESEARCH GROUP DEMAND-DRIVEN CARE Smart Environment

1st author: Title: Provisional end date:

Jikke Reinten MSc Healthy environments in hospitals: acoustics January 2019

Background & research question Health, well-being and behaviour of people are influenced by auditory stimuli.

This influence can be altered by a direct physiological change, such as the destruction of inner ear hair cells when exposed to a very loud noise. This can cause hearing loss and may also lead to a direct behavioural action: covering our ears. The influence can also be less direct, for instance as the sense of safety a child might experience when it hears its parents speaking softly in the garden on a summer evening. The design of a building influences the acoustic environment and therefore affects our well-being, comfort and health.

There is only a small amount of studies available on the influence of room acoustics on hospital staff. Nurses are the largest group of hospital staff members. This is one of the reasons to focus this research on healthy acoustic environments for nursing staff. However, the aim is to provide a general framework on how the sonic environment influences people. Within this framework, existing knowledge can be placed, and it can systematically guide future research. The framework should be applicable for any type of environment or target group.

Research question What is the influence of room acoustic parameters on health and work performance of nurses?

Design/methods The project will start with a literature phase, to expand knowledge about the topic and to build a framework to guide this research. The second work package consists of a systematic review of the current knowledge on how 38

auditory stimuli influence people in a professional setting. The theoretical model will be used to analyse literature and identify knowledge gaps.

The third part of the project will focus on the characterisation of the sonic environment in specific hospital areas and the role that room acoustic parameters have. Measurements and analysis of the acoustic environments in several Dutch hospitals (additional data from other countries may be of interest) will be performed. Besides this, an analysis of the working environment in general will be carried out through observational studies. This will provide insight in which tasks might be influenced most by the acoustic environment, the coping mechanisms of hospital staff, and other important contextual factors.

The results of the acoustic analysis and the observations are needed as input for controlled laboratory studies, which will be conducted to measure the influence of possible changes in auditory environment as a result of room acoustic modifications. The main focus of outcomes will be on staff performance.

In the final phase of the research, an intervention study is foreseen to evaluate the findings and find evidence on the influence of room acoustics on health.

Main results to date Currently the project is in the start-up/literature phase. Observational studies are being planned and prepared.

39

RESEARCH GROUP DEMAND-DRIVEN CARE Self Management

1st author: Title:

Provisional end date:

Sigrid Vorrink MSc Maintenance of daily physical activity in chronic obstructive pulmonary disease by means of persuasive technology: a mobile phone application December 2015

Background & research question Persons with chronic obstructive pulmonary disease (COPD) demonstrate reduced daily physical activity (DPA) levels, compared to healthy age-matched controls. Time spent walking or standing and movement intensity is lower, and data suggest patients reduce their physical activity early in the course of the disease. Physical inactivity in patients with COPD is associated with lung function impairment, reduced exercise capacity, reduced health related quality of life, obesity, systemic inflammation, increased risk of hospitalisation, left ventricular cardiac dysfunction, reduced quadriceps muscle mass and strength, metabolic syndrome, diabetes, dyspnea, fatigue, and all-cause mortality.

Pulmonary rehabilitation (PR) is known to improve exercise capacity, but its effect on DPA yields inconsistent results. Obtained benefits decline over time when patients do not continue to exercise after finalizing the program.

Improvements due to PR are shown up to 18 months. However, in the Netherlands, most programmes last for 8 to 12 weeks, and a structured aftercare programme is often lacking. There is a need for additional effective interventions that can improve the DPA level in patients with COPD. There is some evidence that technology may be useful as a motivator to sustain the exercise component after the initial programme is completed. It is expected that the developments in ICT might have a huge influence in this field.

This intervention should also provide the practitioners of various disciplines with a monitor of COPD patients, enabling them to react before exacerbation occurs. When practitioners of COPD patients can foresee health deterioration, they can interfere more promptly. In an earlier stage, treatment is less intensive than after an exacerbation. As a result, work pressure for care professionals and medical costs will decrease.

40

The primary research question is: can an eHealth intervention improve or maintain DPA in patients with COPD after a period of PR? Design/methods 1 An inventory of eHealth interventions for the benefit of COPD patients.

2 Design of an eHealth application for smartphones.

3 Pilot studies with healthy subjects, and subsequently with COPD patients.

4 Feasibility studies of the use of the eHealth application by care professionals.

5 Adjustment of the eHealth application given the results of the pilot studies (step 3).

6 Testing of the eHealth application for effectiveness, validity and reliability.

7 Randomised controlled study of 140 COPD patients during one year.

8 Dissemination to research, education and professionals.

Main results to date The intended result is to optimise the multidisciplinary COPD care in the Utrecht region. This will be achieved by developing a tool in order to maintain the level of physical activity of COPD patients after rehabilitation, and to objectify and simplify monitoring the physical activity. The acquired knowledge and the developed intervention will form part of the usual care for COPD patients. The Institute for Nursing Studies, the specialisations Respiratory Nursing and Advance Nursing Practice, and the Institute for Physiotherapy of the Universities of Applied Sciences, the Institute of Nursing Sciences, Physiotherapy Sciences, and Kinetic Sciences of the universities, will also benefit from the knowledge generated by this project. This knowledge and experience will give insight into the possible use of eHealth for other target groups with limited mobility.

Discussion An important element for successful implementation of an eHealth intervention is to engage users in the design process because design flaws can affect ease of use, usability, and reliability of the system, which may reduce a userâ&#x20AC;&#x2122;s willingness to use the intervention.

41

RESEARCH GROUP DEMAND-DRIVEN CARE Self Management

1st author: Title:

Provisional end date:

Thijs van Houwelingen RN MSc Educational preparation of nurses using technology as a way to provide healthcare remotely September 2017

Background & research question Within the next decade, the number of care professionals (in The Netherlands) will no longer be sufficient to deal with the increasing demand for care. eHealth, for example screen-to-screen contact instead of regular face-to-face, offers older adults a solution to age in place, and is claimed to be a solution for the increasing demand for care. Despite the apparent positive effects of this technology, there are several barriers to implementation. One of the main barriers is largely caused by the lack of knowledge and skills of healthcare professionals as to how to use this new technology. The primary aim of this doctoral research is providing evidence-based knowledge, skills, and competencies required for the use of eHealth technologies with patients living at home.

Design/methods

42

Phase 1 Gerontechnology

Phase 2 Medical education

Phase 3 Gerontechnology & Medical education

Exploration of predictors of the use of eHealth by care professionals and older adults

Development of eHealth competency framework for nurses

Examining the impact of education on the willingness of nursing students to use eHealth

Survey – multiple regression analysis

Delphi-study

One group pretest- posttest design

Nurses working in a home care organization and older adults living independently

Nurses / clients using eHealth, technicians, and teachers – bachelor of Nursing

Students – bachelor of Nursing

The Unified Theory of Acceptance and Use of Technology (UTAUT) has been used as a starting point in phase 1. Theories of Entrustable Professional Activities (EPA’s) and medical competence will play a central role in phase 2, 3 and 4.

Main results to date Results phase 1: In our sample of nurses, willingness to use home telehealth was predicted by its (a) perceived usefulness to the client (β = 0.435, p < 0.001)), (b) effort expectancy (β = 0.280, p = 0.001), (c) social influence (β = 0.216, p = 0.013), and (d) cost expectations (β = 0.236, p = 0.004).

Discussion Home telehealth, signifying a transition from face-to-face care to screen-toscreen care, may contrast with expectations of healthcare professionals at the beginning of their career. Dutch healthcare professionals feel valued when they help patients out of bed, help them change their clothes, help them eat, or assist them in taking a walk (activities of daily living). The fear of losing this interaction may create a barrier for the use of home telehealth by healthcare professionals. Therefore, more research is needed to gain an understanding of the quality of contact when nurses provide ‘care at distance’. Furthermore, the actual effectiveness of educating nurses and / or nursing students, based on predictors from phase 1, has to be examined. For many years, studies in the literature have emphasised the urgency of eHealth education. Therefore, the slow development of eHealth education is remarkable.

Phase 4 Medical education

General Discussion Gerontechnology & Medical education

Examining the impact of eHealth competencies on ‘behavior’ of nurses and / or patient satisfaction

Reach consensus on the past, present and future of eHealth competence of nurses

Within group design

Literature review

Nurses and clients using eHealth in a home care organization

Cochrane, CINAHL, PubMed, Science-Direct, Scopus

43

RESEARCH GROUP LIFESTYLE AND HEALTH Harriet Wittink PhD

46

Many people who have difficulties being physically active due to a disability or pain are at risk for decreased physical capacity and for comorbidities. This decreased capacity may threaten their functional autonomy. Decreased functional autonomy is defined as “functional ability in ADL, mobility, communication, mental functions, and instrumental activities of daily living” .

Prevention and recovery of decreased functional autonomy is possible by increasing physical capacity.

Within the research group Lifestyle and Health, the main focus is on the relations between physical activity, physical fitness, and autonomy, and the factors that influence these relationships, to increase autonomy or prevent loss of autonomy in children and adults.

Within the research group Lifestyle and Health, there is a growing emphasis on looking at an optimal start early in life. This includes both research evaluating (ab)normal motor development in infants (GODIVA study), and research looking at physical activity and exercise in children with chronic childhood onset conditions (Fit for the Future! and the HAYS study). While working on different topics, both groups work in large consortia, consisting of universities, hospitals, rehabilitation centres and primary care paediatric physical therapists across the Netherlands. The group of paediatric research (“Kind in Beweging”) within the group Lifestyle and Health currently consists of 2 senior researchers and 7 junior researchers, including over 50 students on a yearly basis, either directly participating in research or following a minor course related to these topics.

The adult research group consists of 2 senior researchers and 6 PhD students, plus a large number of students, either participating in research or following a minor course related to the adult topics.

In the adult track the focus is primarily on: • The prevention of loss of autonomy in patients after stroke through stimulating physical activity and increasing physical fitness and prevention of falls (SUSTAIN).

• The prevention of loss of autonomy through personalized care for patients with neck pain.

• Increasing autonomy in patients with chronic pain during and after pain rehabilitation (PREPGO, SOLACE), in (low literate) patients in physical therapy practices (TransFysa), and through changing illness perceptions (PERCEPT).

For the children track, please refer to the abstracts by dr. Janke de Groot and dr. Jacqueline Nuysink.

47

RESEARCH GROUP LIFESTYLE AND HEALTH

1st author: Title:

Provisional end date:

Janke Oosterhaven MSc PREPGO study: pain rehabilitation in patients with low levels of health literacy: explaining dropout in a chronic pain management programme July 2017

Background & research question Chronic pain has a negative impact on quality of life, daily functioning, mood and sick leave. One in five adults in the Netherlands (2,25 million) suffer from chronic pain. Chronic pain rehabilitation programmes have been shown to be effective. Unfortunately, dropout of patients with chronic pain from chronic pain programmes is an important problem in those programmes. Early dropouts more often have poor treatment outcomes and cause higher medical costs for society. In scientific research it remains unclear why and how many patients with chronic pain drop out in chronic pain rehabilitation in the Netherlands.

The aim of the PREPGO study is to gain insight into the mechanisms behind dropping out. The central research question is: which socio-demographic and clinical factors predict early “dropping out” in patients with chronic pain being treated in a chronic pain management programme? The hypothesis in the PREPGO study is that patients with chronic pain and low levels of health literacy have higher dropout rates than patients with higher levels of health literacy.

Low levels of health literacy may be related to maladaptive illness beliefs and unrealistic treatment beliefs, which in turn may lead to dropout.

Design/methods The PREPGO study is a ‘mixed methods’ research: both qualitative and quantitative research methods are used. This study acknowledges the need to take account of patient perspectives in chronic pain rehabilitation programmes Patients with chronic pain themselves are the research subjects in this study. The starting point of the PREPGO study is a systematic literature review about patient characteristics related to dropping out of chronic pain management programmes. In a longitudinal prospective quantitative study, all patients who 48

start in a chronic pain programme are followed throughout the programme.

From the patients with chronic pain who drop out in the pain rehabilitation programme, quantitative data (social demographic data, depression (HADS), health status (SF 36), pain catastrophising (PCS), pain self-efficacy (PSEQ), pain intensity/impairment (PSK), illness perceptions (IPQK) and treatment beliefs (TBQ)) will be collected, to find out which factors predict dropout. With qualitative research methods, more in-depth information will be collected on illness beliefs, treatment beliefs, health literacy levels, and reasons for dropout in patients with chronic pain in a pain rehabilitation programme.

Main results to date The output of the mixed methods research on dropout mechanisms will be used to construct a theoretical model explaining dropout in chronic pain management programmes.

First results of the PREPGO study are expected in 2015-2016.

Discussion The innovative aspect of this project is that we a better understanding of dropout mechanisms in chronic pain rehabilitation programmes. Special attention will be given to levels of health literacy, illness beliefs and treatment beliefs in patients with chronic pain.

49

RESEARCH GROUP LIFESTYLE AND HEALTH

1st author: Title:

Jacqueline Outermans MSc Investigating and stimulating long term walking activity in stroke (SUSTAIN)

Study 1 Perceived barriers and facilitators for community ambulation in individuals after stroke. A qualitative study, using an integrated biomedical and behavioural theory of functioning and disability.

Background There is only limited insight in barriers and facilitators for community ambulation after stroke. This inhibits the development of efficient programmes to stimulate community ambulation. The purpose of this study was to explore perceived barriers and facilitators for community ambulation using a model of integrated biomedical and behavioural theory, the Physical Activity for people with a Disability model (PAD).

Methods 36 respondents participated in 16 semi-structured audio recorded interviews, 8 structured interviews, and 2 video recorded focus group interviews. A framework analysis was used after verbatim transcription. The PAD model was used to define themes a priori.

Results Important findings were barriers perceived in impairments of exercise capacity next to motor control and fatigue. Negative social influence, resulting from restrictive caregivers in the social environment, low self-efficacy, influenced by physical environment, and negative attitude towards physical activity were identified as important barriers for community ambulation.

50

Conclusion It seems of particular importance to address social influence and attitude towards community ambulation in the development of efficient interventions, as they influence the intention to walk in the community. At the same time the improvement of exercise capacity needs to be addressed.

Study 2 Associations of aerobic capacity and walking capacity after stroke: differences by cardiopulmonary effort and the influence of balance and strength.

Background Reports of the association between walking capacity and aerobic capacity after stroke show wide variations. The first aim was to explore differences by cardiopulmonary effort in the univariate association between walking capacity and aerobic capacity after stroke. Second aim was to explore to which extent VO2peak explains the variation in walking capacity after stroke, and how other variables distort this association.

Methods 51 subjects after stroke underwent Cardio Pulmonary Exercise Testing (CPET) to assess aerobic capacity and the Six Minute Walk Test (6MWT) for walking capacity. Possible confounder variables were: age, extremity muscle strength (Motricity Index, (MI)), gait impairment (Rivermead Visual Gait Assessment, (RVGA)) and balance, (Performance Oriented Mobility Assessment, (POMA)).

Correlation coefficients were calculated for 6MWT with VO2max (when achieved) and VO2peak respectively. Multiple linear regression analyses were used to identify confounding covariates of the relation between 6MWT (dependent) and VO2peak (independent). A 10% change of the standardised regression coefficient (β) after adding a candidate confounder variable was considered indicative of confounding.

Results The Pearson correlation coefficient (rp) between the 6MWT and aerobic capacity in subjects achieving VO2max (N = 22) was .561 (95%CI .121 - .967). In subjects achieving VO2peak (N = 29) rp = .724 (95%CI .377 - .921). There was no significant difference (p = .35) between both correlation coefficients. For the total sample rp = .712 (95%CI .385 - .835). Multiple regression analysis showed a significant decrease of the β for VO2peak of 21,6% after entering POMA, and 13,9% after entering MI in the equation.

Conclusion The strength of the correlation of the 6MWT with VO2max is moderate and with VO2peak strong. Balance and, to a lesser extent, muscle strength are confounders of the relation between 6MWT and VO2peak of the total sample.

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RESEARCH GROUP LIFESTYLE AND HEALTH

1st author: Title:

Provisional end date:

Marlies Welbie MSc PT Health literacy in physical therapy. How to adapt and use a questionnaire in a Dutch and Turkish low health literate patient population 1 July 2016

Background & research question Healthcare develops towards a more patient centred care approach (PCC).

Patients are required to take on a more active role in making decisions about their health. To do this effectively, patients need to be able to seek, understand, and use health information; a concept referred to as ‘‘health literacy’’ (HL). Poor HL is associated with reduced patient activation. The tendency to be more passive complicates patient-provider interaction and undermines the possibilities for receiving PCC. Little is known about the patient role in PCC and how patients can be empowered. This study aims to contribute to filling this knowledge gap.

The hypothesis underlying this study is that adapting and using a questionnaire to help patients with poor HL to order and prioritise their symptoms and limitations and make them explicit will help them to take a more active part in patient-provider interaction during the diagnostic process of physical therapy treatment.

The aim of this study is to adapt a screening questionnaire and develop a tool which helps Dutch and Turkish physical therapy patients with poor HL who report pain to be more capable of taking on an active part in the decision making process within the diagnostic phase of physical therapy in the Netherlands.

This fits the theme of autonomy because patients get empowered in arranging the specific care they want and need for themselves.

52

Design/methods Qualitative: Semi-structured interviews Focus group interviews Cognitive interviews Three-step-test interview Quantitative: Video analysis; RIAS coding system Main results to date • Prototype Dutch Talking Touch Screen Questionnaire • Third place RAAK award for the development of the Dutch Talking Touch Screen Questionnaire • Nominee Univé Paludanus award for the Dutch Talking Touch Screen Questionnaire: https://www.youtube.com/watch?v=YL1YIujlgQI • Accepted: Cremers A.M.H, Welbie M, Kranenborg K, Wittink H. Deriving guidelines for designing interactive questionnaires for low literate persons Development of a health assessment questionnaire. Universal Access in the Information Society Journal • Submitted: Welbie M, Wittink H, Westerman M.J, Devillé W.L.J.M. Patient perspectives on respondent burden and added value of the most frequently used questionnaire in Dutch physical therapy practice: the Patient Specific Complaint Questionnaire; a qualitative study.

53

RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

1st author: Title:

Provisional end date:

Janke F. de Groot PhD P.T., associate professor Research line Fit for the Future! Physical activity, exercise and health in children with chronic childhood onset conditions 2017

Within this research group, studying physical activity, exercise and health in children with chronic childhood onset conditions, there are two main projects.

One of them is Fit for the Future!, which is financed by SIA RAAK PRO (20132017), and is a continuation of and earlier project called "Healthy Active Living in Youth with Neuromotor Disability" (HALYNeD). Fit for the Future! is a successful consortium including HU University of Applied Sciences, Wilhelmina Children's Hospital, Rehabilitation Centre de Hoogstraat, Erasmus Medical Centre, VU University, KJ Projects, the Dutch organisation for paediatric physical therapists (NVFK), and Fitkids, representing 150 PPT practices across the country.

This projects aims to create a system for knowledge transfer from academic research outcomes to the daily practice of paediatric physical therapy, while at the same time working on translational research in the field of exercise physiology and physical therapy in youth with childhood onset disability. The HAYS study is a ZonMW financed project looking at the health effects of adapted sports in children and youth. It is a cooperation between HU University of Applied Sciences, Wilhelmina Children's Hospital, Rehabilitation Centre de Hoogstraat and several sports organisations across the Netherlands. Next to our connections in the Netherlands we also collaborate with international partners in our field.

Our group at HU University consists of one senior researcher and four PhD students. Aside from research, we offer internships for students to participate in our research and developed a minor course â&#x20AC;&#x153;Child and Exerciseâ&#x20AC;?. Indeed, in the last few years, many students from both outside and within the Institute of Human Movement Studies have participated in our research. Several students 54

have won both institutional and national prizes for their thesis. For paediatric physical therapists (and professionals in related fields), we offer workshops, symposiums, and opportunities to participate in our projects as well.

Publications, current student projects, and other information can be found at our website: www.fitforthefuture.hu.nl

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RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

1st author: Title: Provisional end date:

Manon Bloemen MSc Physical activity and physical fitness in (wheelchair dependent) youth with spina bifida 1 March 2017

Background & research question Youth with physical disabilities are less physically active and less physically fit compared to peers who are typically developing. Moreover, youth with spina bifida (SB) score in the lowest ranges. No tests are available that measure physical fitness in youth with SB who self-propel a manual wheelchair; there is insufficient information about factors that may influence physical activity.

1. Which tests regarding physical fitness are valid and reproducible in youth with SB who self-propel a manual wheelchair?

2. What is the level of physical fitness and physical activity in youth with SB who self-propel a manual wheelchair, and what are the correlations between physical fitness and physical activity?

3. What are the facilitators and barriers to consider when aiming to improve participation in physical activity in youth with SB? 4. What are the facilitators and barriers to consider when aiming to improve participation in physical activity in youth with a physical disability?

Design/methods Research question 1 and 2. Cross-sectional clinimetric and explorative studies.

Children and adolescents with SB, 5 â&#x20AC;&#x201C; 18 years of age, who self-propel a manual wheelchair, were included.

Research question 3. Systematic review in which both qualitative and quantitative studies were included.

Research question 4. Qualitative thematic analyses. Data was collected using focus groups and interviews in children and adolescents with SB and their parents.

56

Main results to date Research question 1. The Graded Wheelchair Propulsion Test is a valid and reproducible test that measures aerobic capacity in youth with SB who selfpropel a manual wheelchair. Preliminary results show that the Shuttle Ride Test is a valid and reproducible field test to measure aerobic performance, if a portable gas analysis system is used to measure VO2peak. The Muscle Power Sprint Test, 10x5 meter sprint test and slalom test seem to be valid and reproducible tests to measure anaerobic performance and agility in this population. The One Stroke Push Test seems to measure aspects of muscle strength and wheelchair features. However, about 50% of the variance remains unclear and may be influenced by aspects of wheelchair propulsion technique.

Research question 2. Data has yet to be analyzed.

Research question 3 and 4. An overview of facilitators and barriers regarding physical activity for youth with SB and for youth with a physical disability is available. Self-efficacy, sufficient fitness and the ability to perform complex skills (such as wheelchair skills) seem to play an important role in becoming and staying physically active.

Discussion There are important limitations because of the cross-sectional design of this study. Future intervention studies should be developed, to analyze if the mentioned facilitators do influence physical activity. During this intervention studies, clinimetric properties like “Minimal Clinical Important Change” and “Responsiveness” of the developed tests may be determined.

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RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

Authors: Title:

Provisional end date:

Karin van der Ende-Kastelijn and Kristel Lankhorst Pt MSc Health in Adapted Youth Sports â&#x20AC;&#x201C; HAYS Health effects of sport participation in children and adolescents with a chronic disease or condition September 2017

Background & research question Children and adolescents with a physical disability or chronic disease often show reduced fitness levels and physical activity patterns. They participate less in competitive and recreational sports, compared to their non-disabled peers.

Being less active not only affects fitness, but also creates a higher risk for a variety of health related diseases and injuries. In addition, sport participation in children and adolescents with a physical disability or chronic disease may have positive effect on both (psychosocial) health and cognition. While these relationships have been reported in healthy children, these benefits have not been established in children with childhood disability or chronic childhood disease. Therefore, the aim of the HAYS study is to describe the differences in health status and cognition between children and adolescents with a physical disability or chronic disease who participate in sports, compared to their nonsporting peers.

Research question: what are the differences between children and adolescents with a physical disability or chronic disease who participate in sports in physical fitness, physical activity, injuries and illness (sport and activity related injuries or illness), cognition (school performance, attention, motivation), psychosocial health (self-efficacy, quality of life), compared to their non-sporting peers?

Design/methods The HAYS study will be a cross-sectional study comparing children and adolescents with a physical disability or chronic disease, aged 12 to 19 years, who are active in sports, to their non-sporting peers. Injuries and illnesses will be monitored longitudinally for one year to objectify the incidence, severity and extent of injuries and illnesses. Children and adolescents with a physical 58

disability will be included. Physical disabilities could be cardiovascular, pulmonary, musculoskeletal or neuromuscular disorders. Both children and adolescents who are ambulatory or propelling a manual wheelchair will be included. Children and adolescents who participate in sports will be recruited among different patientsâ&#x20AC;&#x2122; associations and sports clubs. Athletes will be recruited on a different range of sport levels: from top sport to recreational level.

Main results to date The inclusion and measurements were started in September 2014. 65 participants are now included.

Discussion The aim of the HAYS study is to establish the health effects of sport participation in children and adolescents with a physical disability or chronic disease.

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RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

1st author: Title:

Provisional end date:

Kristel Lankhorst Pt MSc Development of a valid instrument to measure physical activity in children with a physical disability or chronic disease in the paediatric physical practice September 2017

Background & research question There is a need to measure physical activity patterns in an objective manner in children with a physical disability who are ambulatory or using a wheelchair based on reviews from the HALYNed study and phase 1 of Fit for the Future and focus groups.

At this moment, there is no valid instrument to measure physical activity objectively. However, such an instrument could prove convenient and practical in the paediatric clinical practice.

Research question: What is the validity of the Activ8 (accelerometer) in children with a physical disability who are ambulatory or using a wheelchair?

Design/methods The first step is the development of a valid and useful instrument for measuring physical activity in daily life. This instrument will be constructed on the base of a systematic review: measuring physical activity in wheelchair users.

Besides this review, professionals, parents and researchers will be involved in both the development and in studies about reproducibility and the clinical applicability.

The second step is the validation of this instrument (the Activ8). The validation process consists of testing criterion validity, in which the Activ8 is compared with the gold standard (video recordings). The Activ8 will be validated in 30 children, ten of whom are typically developed, ten are ambulatory with a physical disability and ten have a physical disability using a wheelchair.

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Main results to date All the measurements are finished. The analysis of the data is started at the moment. First results are expected in November 2015.

Conclusion / Discussion The Activ8 device will be implemented in research and in the paediatric private practice to measure physical activity in daily life in an objective manner in children and adolescents with a physical disability who are ambulatory or using a wheelchair.

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RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

1st author: Title:

Provisional end date:

Marleen Sol MSc Wheelchair training: effective for both skills and participation in daily activity? (part of Fit for the Future!)

September 2017

Background & research question It is estimated that 1 in 14 to 20 children is disabled or has a chronic disease, with approximately 8% being wheelchair dependent. Several studies have shown youth and young adults with disabilities to be less active and less fit compared to peers. Furthermore, studies have reported that adolescents and young adults who use a wheelchair are even more inactive and less fit than their peers who walk. Just like in healthy children, an active lifestyle is recommended for prevention of non-communicable disease and general health benefits. Next to these benefits, children with disabilities benefit even more from sufficient levels of physical activity (PA), as higher levels of fitness are related to higher levels of physical functioning. At the same time, we also know just intervening to improve physical fitness does not result in sustainable change in physical activity levels. Therefore, looking at interventions to improve in PA in children who are wheelchair dependent is an important goal for physical therapists working with these children. Recent qualitative research has shown the possible role of both physical fitness and wheelchair skills competence and self-efficacy in relationship to physical activity levels, but this has not been confirmed by intervention studies.

Therefore, the purpose of this research is to determine the effects of a combined physical fitness and wheelchair skills intervention program in relation to participation in daily physical activity levels in youth who are wheelchair dependent.

Design/methods The study is conceived as a non-randomised controlled trial, taking place at five schools for special education in the Netherlands. Schools will be assigned to 62

either the intervention or the control group. Intervention 1: 8 weeks of fitness training, followed by 8 weeks of wheelchair skill training. Intervention 2: 8 weeks of wheelchair skill training, followed by 8 weeks of fitness training. Control: 16 weeks of usual care (special education, often aimed at fitness). Children will be assessed at T0 (baseline), T1 (after 8 weeks of intervention 1 or 2), T2 (at the end of intervention 1 and intervention 2 and usual care) and T3 (1 year later), for their levels fitness, wheelchair skills, physical activity and self-efficacy.

Children (8-18 years of age) will be included at the schools participating in the trial. Inclusion criteria are: wheelchair dependency for most hours of the day or for sports; no contra-indications for fitness training or wheelchair skill training; and signed informed consents.

Discussion Results of this study will be used to determine effectiveness of wheelchair skill training combined with fitness training. Novel outcomes are objectively measured physical activity and self-confidence in activities of daily life and, more specifically, in activities related to wheelchair use.

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RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

1st author: Title:

Jacqueline Nuysink PhD Gross motor development of infant using home video registration with the Alberta Infant Motor Scale (GODIVA)

Background & research question The GODIVA project started with a request of paediatric physiotherapists (PPTs) to design a method for following motor development of young children over time through video images, created by the parents themselves. Central to their question is the development of an objective, quantifiable observation method that is not too stressful for parents and child, which enables PPTs to quickly and efficiently follow the course of the early gross motor development (like rolling over, sitting independently or walking) in children in the first 18 months of their lives. For this application, an existing observation instrument is used: the Alberta Infant Motor Scale (AIMS).

Design/methods To meet this request, a consortium was composed. In this, two faculties of the HU (Faculty of Health and Faculty of Science and Technology) participate, as well as three PPT departments of large hospitals (Wilhelmina Children's Hospital, VU University Medical Centre, and St. Antonius Hospital), the NVFK (professional association of PPTs), the regional PPT working group (as a representative of 21 PPT practices), Leidsche Rijn Julius health centres, and the Utrecht University, Faculty of Social Sciences/Pedagogy. This consortium creates a solid network of professionals, trainers, and knowledge institutions that deal with early development. The research fits in with the theme of Care and technology and fits in well with the new mission theme of the research centre, autonomy.

The consortium has answered the question elaborated in four innovation and research projects:

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(1) Validation research using video recordings made by parents compared to live observation by therapists, to score the AIMS. (2) Innovation and feasibility study about technical, legal and operational aspects.

(3) A pilot study of longitudinal developmental trajectories measured in healthy infants.

(4) A cross-sectional study to evaluate the motor performance of Dutch infants compared to the original Canadian normative data.

(Expected) results Concrete results to date (June 2015): • A validated video observation method usable for research.

• A (web-based) app for safely uploading and testing video material.

• A database with videos that can be widely used in the training of (future) professionals, and a video tool for training in digital scoring of the AIMS. In addition to these tangible results, more knowledge and insight in the (longitudinal) developmental trajectories are expected, and through them a new way to look at development might ensue. Facilitators and barriers for both professionals and parents using the video method will be mapped. We will also gain more insight in the applicability of the Canadian norm values for the Dutch population. The cooperation between the consortium partners facilitates interaction between the knowledge centres Hogeschool Utrecht (HU) and Utrecht University (UU), the PPT master’s degree programme and PPTs working in hospitals and in primary care and health centres, using each other's competences to an effective network around early development.

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RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

Authors: Title:

Provisional end date:

Marike Boonzaaijer MSc, Imke van Maren-Suir MSc, Jacqueline Nuysink PhD Using a video tool for parents to evaluate infants gross motor development with the Alberta Infant Motor Scale: a feasibility study January 2016

Background & research question The daily integrated use of smartphones is common across the world. In the Netherlands the number of smartphones increased in 2013 by over a million, from 7 million to 8.5 million. Many parents use their smartphone to make videos of their child. Pediatric physical therapists (PPT) and pediatricians notice that parents bring video material to the practice to show gross motor development of their child.

Taking this into account, the GODIVAstudy developed and validated a method using home video recordings made by parents to observe gross motor performance on the Alberta Infant Motor Scale (AIMS) in infants (0-19 months).

Parents are invited to make a structured video of their infantâ&#x20AC;&#x2122;s gross motor repertoire in the home environment. They are guided by a tutorial video and a checklist, and are free to choose a suitable time for the child and themselves to make the recording. The video can be send to a PPT, who will use the video to assess the gross motor repertoire of the infant using the AIMS. An accessible smartphone application for filming and securely uploading the material was developed by students of our Technical Faculty and is being implemented.

At present, the method is used for research purposes to study the variety of gross motor trajectories in typical developing infants. In this design, parents are being asked to make five home videos of their infant in nine monthsâ&#x20AC;&#x2122; time.

In the future, the video method can also become a helpful tool for clinicians. For a successful implementation it is important to explore the feasibility of the method. The objective of this study is to describe expectations and experiences of both user groups: parents and professionals (PPTs) to identify barriers and facilitators to the video method.

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The research questions regarding the parents are: 1. Are all parents able to make useable home videos of their infant, given a set of instructions?

2. How do parents experience this method in regard to their infant’s motor development?

3. Are parents motivated to engage in a longitudinal follow-up? ‘ The research questions regarding the pediatric physical therapists (PPTs) are: 4. What are the barriers and facilitators of the video method for PPTs in both private practices and hospitals?

Design/methods To find answers to these questions, a ‘mixed method approach’ is being used.

Data has been collected during the validation study (November 2013-July 2014) and during the current pilot study longitudinal pilot (September 2014-January 2016).

Methods validation study: - Questionnaire for parents (n=48) - Interviews with parents (n=10) - Focus groups with pediatric physical therapists (n=22) (hospital/private practice) Methods longitudinal pilot: - Questionnaire for parents (n=50) - Interviews with parents (n=8-10) Results Data collection and data analysis are still in process. Final results are expected by the end of 2015.

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RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

Authors: Title:

Provisional end date:

Imke van Maren-Suir MSc, Marike Boonzaaijer MSc, Jacqueline Nuysink PhD Gross motor Development of Infants using home Video registration with the Alberta Infant Motor Scale (GODIVA): a longitudinal pilot January 2016

Background & research question Contemporary theories support the premise that motor development is characterised by intra-individual variability. If there is a better understanding of the variability in gross motor development of typically developing young infants, the possibility exists that non-typically developing children are better recognised. Therefore, the aim of this pilot is to gain insight in the variability of the gross motor development of healthy, full-term born, typically developing children. Multiple observations over time are needed to define the motor developmental trajectory of an infant with more accuracy.

Longitudinal measurements of the motor development of infants in the age of 6 weeks to 19 months, scored according to the Alberta Motor Infant Scale (AIMS), will give us the opportunity to develop longitudinal motor trajectories.

Design/methods The aim of the pilot was to include 50 children in the study. Two parallel cohorts cover the total age range (6 weeks to 19 months). The first cohort started at the age of six weeks; the second cohort started at the age of 8,5 months. The gross motor development is assessed by the AIMS using home video registration. The protocol of the AIMS home video registration has been validated in an earlier study of GODIVA and has shown fair psychometric properties.

Parents of healthy, typically and full-term born children who understand the Dutch language, video-recorded their infant five times with two month intervals, according to a checklist and an instruction video. The two researchers assessed the video observations with the AIMS.

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A web-app has been developed where parents can upload their video recordings safely. When a received film was assessed, feedback on the gross motor development was sent to the parents. The feedback consisted of a 'growth chart' in which the results of the test were compared with the normreferences. With longitudinal analysis insight in the individual motor trajectories will be achieved.

Results The aim of the pilot to include at least 50 infants has been achieved. But, at the time of writing, data collection of the repeated measurements is still in process.

Final results are expected at the end of 2015.

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RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

1st author: Title:

Provisional end date:

Petra Nijmolen MSc Gross motor performance in Dutch infants: standardisation of the Alberta Infant Motor Scale (AIMS-NL) December 2015

Background & research question The Alberta Infant Motor Scale (AIMS) is a norm-referenced observational instrument to assess gross motor performance of infants aged between 0 and 19 months (from birth to independent walking). This scale has been developed in Canada and is utilised for clinical and research purposes in many countries.

However, it has been questioned whether the initial standardisation of Canadian infants is also representative of other countriesâ&#x20AC;&#x2122; populations, including the Dutch population.

In 2013, a re-evaluation study was published, comparing the original normative data of the AIMS (N=2,202), collected 20 years ago, with a contemporary sample of Canadian infants (N=650). Researchers used statistical scaling methods to examine the appropriateness of the present norms and to recalibrate the present percentile ranks where necessary. The cost-effective statistical method developed for this study was published, enabling international researchers to use the same approach to evaluate the validity of Canadian-based norms for their infant samples. In the following study this method will be applied.

Research question: does the AIMS need adapted reference values for Dutch infants?

Design/methods We have set up a cross-sectional study of 450 Dutch infants between the ages of 2 weeks and 19 months, assessed once with the AIMS using a standardised homemade video observation. The assessments are stratified by age. The infants represent the ethnic diversity of the Dutch population. Infants with atypical motor development will be excluded.

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In 2014, validation and feasibility studies took place for gross motor development of infant using home video registration with the Alberta Infant Motor Scale within the GODIVA-project. This enables parents to make the home video registration at a moment that suits both parents and child, using a checklist and an instruction video. A trained paediatric physical therapist assesses the home video after admission. These studies provided a valid and reliable home video-observation method for assessing gross motor performance in young children. In the following study this method will be used. An important psychometric characteristic of the AIMS is that items describing motor abilities can be placed on a scale representing the age when 50% of the infants would pass each item. Logistic regression will be used to place the AIMS-items on an age scale representing the age at which 50% of the infants of the Dutch data set passes an item to be compared to the original Canadian dataset.

Recruitment and selection of participants is currently the main objective of this study.

Main results to date There are no results to be reported yet. Selection and inclusion of the infants has started in March 2015 and the first results are expected by the end of 2015.

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RESEARCH GROUP LIFESTYLE AND HEALTH

Author:

Title:

Jan Pool PhD PT MT, epidemiologist Associate professor research group Lifestyle and Health Musculoskeletal research line

The research group is studying biological, psychological and social influences of musculoskeletal disorders in patients with pain in the neck, low back, and all kind of different chronic pain problems.

Our groups at the Utrecht University of Applied Sciences consist of one senior researcher and three PhD students. Furthermore, we offer internships for master’s students to participate in the three studies. Participation of bachelor’s students in the minor Co-Design is in preparation.

A short summary of the studies: Click study: non-specific neck pain: to match or not to match?

• PhD student: Francois Maissan The aim of this research line is to identify subgroups of neck pain patients, and devising which intervention is most effective or matches best to what subgroups.

Percept study: Illness Perceptions in Patient Physiotherapy • PhD student: Edwin de Raaij • NWO PhD grant for teachers • Starting September 2015 The aim of this project is: • To assess the influence of illness perceptions in low back pain patients in the clinical practice.

• To develop a reliable and valid questionnaire in the Dutch language to assess illness perceptions.

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• • •

To assess the different types of illness perceptions (prevalence).

To assess the relation between illness perceptions and outcome in low back pain patients.

To develop strategies for influencing these perceptions by the physical therapist.

Solace study: Self-management in chronic pain strategies • PhD student: Stefan Elbers • A RAAK financed project • 2014-2016 The aim of this project is to assess the long-term effect of a chronic pain program and to develop strategies to perpetuate the achieved changes in behaviour. For the latter question, cooperation with the departments Co-Design and Cross-Media Communication in the Public Domain is essential.

Finally the outcome of the co-design phase will be tested in a pilot.

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RESEARCH GROUP LIFESTYLE AND HEALTH

Author: Title: Provisional end date:

Stefan Elbers Self-management in chronic pain strategies (SOLACE) 1 February 2017

Background & research question The SOLACE project aims to investigate relapse after successful treatment in patients with chronic musculoskeletal pain. Although there is an indication that patients with chronic pain relapse after rehabilitation, there is insufficient empirical research available to support this claim (Turk & Rudy, 1991; Morley, 2008). After consulting the treatment staff of chronic pain rehabilitation programmes (Wittink & Pool, 2014), the following research question was formulated: what is the long-term effect of a multidisciplinary chronic pain rehabilitation programme, and are there strategies available to prevent relapse?

Design/methods In total, four objectives have been derived from this main question. First, we aim to investigate the long-term effect of a multidisciplinary chronic musculoskeletal pain treatment programme, and to measure patient relapse, by means of a prospective longitudinal survey. Second, we will use co-design to develop relapse prevention strategies, aimed at adherence to treatment related behavioural changes. This qualitative research method is characterised by the continuous participation of relevant stakeholders throughout all development stages. Third, we will conduct a systematic literature review on the effectiveness of self-management interventions on pain, disability, and health related quality of life in patients with chronic musculoskeletal pain. These three studies will be performed simultaneously in the first 18 months of the project. Subsequently, our fourth aim is to pilot test the outcome of the co-design, to investigate its feasibility in the last three months of the second year. Depending on the outcome of the co-design, an appropriate design will be adopted for the pilot study.

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The SOLACE consortium consists of the following partners: research groups Lifestyle and Healthcare, Co-design and Cross-media Communication at Utrecht University of Applied Sciences, pain treatment clinics in rehabilitation centre Adelante Hoensbroek and Maastricht University Medical Centre (MUMC+), Dutch society for patients with chronic pain ('pijnpatiĂŤnten naar 1 stem'), and the Royal Dutch Society for Physical Therapy (KNGF).

Main results to date We have conducted context-mapping interviews with ten members of the treatment staffs of pain rehabilitation programmes. Patient interviews and prototyping co-creation sessions are planned in the second half of 2015.

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RESEARCH GROUP LIFESTYLE AND HEALTH

Author: Title:

Start of the study:

Hans Heneweer PhD Lifestyle intervention and measuring quantity and quality of work. Research in an occupational setting March 2013

Background & research question Various publications have addressed the negative consequences of impaired health, illness, and disease for work ability and productivity loss at work.

Besides impaired health conditions, different work characteristics, such as high physical or psychosocial work demands, may be related to productivity loss at work and absenteeism.

Many factors effecting work ability can be influenced actively by lifestyle interventions aimed at physical activity, smoking, alcohol, food and relaxation.

The aim of this project is the exploration of the association between lifestyle interventions, more specifically physical reconditioning, and dietary advice and the improvement of the quality and quantity of work performed on an daily basis.

Research questions â&#x20AC;˘ What is the effect of a weekly physical training programme, supported by a dietary advice, on the quality and quantity of work performed on an daily basis by the individual employee? â&#x20AC;˘ What is the proportion of variance within the improvement of scores on quality and quantity of work, explained by scores on physical training and physical, emotional and social lifestyle factors?

Design/methods Longitudinal study with repeated measurements at 6, 12 and 24 months and an estimated duration of 3 years.

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Research population Employees on various degrees of sick leave and employees with an increased risk profile for sick leave of the Police Department Utrecht (NL) participate in the study. Participants are referred by a company doctor and included into the programme after ruling out conceivable health related risk factors for physical exertion.

Measurements • Assessment general health and physical fitness (Res. Dep. Lifestyle&Health); • QQ method (Brouwer et al. 1999); • Vragenlijst ArbeidsReïntegratie (Vendrig et al. 2007 en 2011); • IPAQ-DLV (Poppel et al. 2004); Rand-36 (van der Zee et al.2012); • Vragenlijst voeding (Stegeman (2013) Analysis Analysis will be performed using the intention-to-treat principle.

Descriptive statistics of work ability and productivity, and variables for the factors studied in the cohort will be presented in percentage, means, and standard deviation (SD).

Data will be explored by means of repeated measurements and multivariate regression models with a stepwise-forward-selection approach.

Main (descriptive) results to date Thirty-eight participants completed up to date the full T0 assessment.

Characteristics: age 42,4 mean (sd 13.5); sickness absence 4.1 month mean (sd 4.6); BMI 29.3 mean (sd. 6.3); exercise capacity male 92.9% mean (sd 32.1); female 109.7% mean (sd 18.2); Measurement scores: Quantity and Quality of work (QQ method 10 point score): 5.68 mean (sd 3.1) resp. 6.84 mean (sd 2.9). Physical activity (IPAQ sf): levels of intensity: low 4 (11%), moderate 25 (67%), high 8 (22%). Rand 36: PCS 47.3 mean (sd 9.6); MCS 40,4 mean (sd 15.2).

Preliminary analysis revealed significant, (low up to moderate) correlations (rp) between scores on the Rand 36 (PCS) and VO2 peak / BMI and the self-estimated emotional ability to perform work. Both scores on quality and quantity of work are significantly correlated with scores on the Rand 36 (MCS), VO2 peak and BMI. Self-estimated physical work ability is moderately correlated with self-estimated emotional work ability, quantity and quality of work.

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RESEARCH GROUP PROCESS INNOVATION IN PHARMACEUTICAL CARE Ad van Dooren PhD M.Ed

Improving patientsâ&#x20AC;&#x2122; self-reliance and autonomy is the focal point of our research group Process Innovation in Pharmaceutical Care (IPCP). This focal point is translated into studies aimed at (1) improvement of medication adherence; (2) safe and efficient prescribing, administering, and using (new) medicinal products; and (3) communication and engagement in patient-provider discussions on e.g. medication use. The results of these studies will contribute to rearrangements of tasks and responsibilities within the (pharmaceutical) care domain.

The mission of our research group IPCP is the improvement of processes in pharmaceutical care and skin therapy, focused on (1) the patient, (2) professionals graduated at universities of applied sciences in disciplines such as pharmaceutical business administration and skin therapy, and (3) the communication processes between these two focal groups, in particular related to prescribing and using (safe) medication, and to self-management and evidence-based care processes in skin therapy.

This leads to the following research lines: 1. (Pharmaceutical) autonomy, self-reliance, and participation in care by patients, particularly aimed at: a. Medication adherence (e.g. the current HomeCoMe study) b. Decrease of use of medication (such as the current DIKSAP study) c. Safe use of medication, also related to the relationship between medication use and patient quality of life (such as the Hypo but not Happy study) d. Migrants in community pharmacy 2. Task and responsibility rearrangements within the pharmaceutical and skin therapeutic care domains (e.g. The BRINTA, PARAPLU and ZAZA studies) 3. Communication processes within the pharmaceutical care domain (such as the DESTINE and COMPARTIMENT studies) The research group is a centre of expertise for medication related care and skin therapeutic care to the advantage of the patient, and collaborates with many parties within these domains. One of our current initiatives is the establishment of a paramedical research laboratory.

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Current research lines • HomeCome: pharmacists visits to patients’ homes after hospital discharge.

• DIKSAP: DIabetes voorKomen door Sallandse APotheken (prevention of diabetes through community pharmacists in the Salland region).

• Hypo but not Happy: quality of life of hypothyroid patients, in particular in relation to their medication.

• Migrants in community pharmacy. Study with a grant from KNMP (Royal Dutch Pharmaceutical Society).

• BRINTA: Basic Research into Integrated Therapy of Acne.

• PARAPLU: PAtient self-ReliAnce to Prevent(venous) Leg Ulcers.

• ZAZA: Zelfstandig Apotheker Zonder Apotheek (self-employed pharmacist without a pharmacy).

• DESTINE: Diabetes Education & Self-management To INcrease Empowerment.

• COMPARTIMENT : COMmunications on PARkinson Therapy Innovations AssessMENT.

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RESEARCH GROUP PROCESS INNOVATION IN PHARMACEUTICAL CARE Communication with the patient

Author: Title:

Bas Steunenberg PhD Medication use underutilisation in older nonwestern migrants: improving health literacy from the community pharmacy

Background & research question Older immigrants are in a disadvantaged position regarding disease prevalence and drug use. If language proficiency and health literacy are insufficient, they will predominantly remain so, even if they have been resident of the Netherlands for a long time.

In cooperation with the research group Process Innovation in Pharmaceutical Care (HU), Pharos (Pharos.nl), health centre Kanaleneiland Utrecht (gezondheidscentrum-kanaleneiland.nl), Dutch Network Older Migrants (NOOM.nl) and Pharmacist Association Utrecht (apothekers-vmn.nl), a project is started to enhance the knowledge about health, healthcare and drug use, and to improve medication self-care skills and drug adherence within the group of older migrants.

Aim of this project is a transition towards culturally sensitive pharmaceutical services that optimally address the wishes and needs of older migrants. It leads to improved pharmaceutical processes and care to actively help older migrants enhance their health literacy.

Design/methods The community pharmacist in this project employs a community health worker (CHW), who knows and is able to get in contact with the local community of older migrants. This model is based on the healthcare and social welfare utilisation optimisation project of the UMC Utrecht, Voice of the Older Migrant.

The CHW visits older migrants (mostly Moroccan, Turkish and Chinese older adults) at their homes and interviews them about their medication history and

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drug use adherence. With this input, meetings and workshops are organised for the older migrants to attend. These meetings and workshops are aimed at enhancing health literacy and self-care skills.

Next to this, the service of the community pharmacist to the older migrants is evaluated. Where possible, it is adjusted to their wishes. The pharmaceutical care and processes are optimised by means of this project, in order to improve access to pharmaceutical care and medication adherence within this group of older adults.

The project starts in august 2015. In 12 months, a toolkit will be developed and included in the guidelines of the KNMP. This project is sponsored by the KNMP and the project partners.

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RESEARCH GROUP PROCESS INNOVATION IN PHARMACEUTICAL CARE Communication with the patient

Author: Title: Provisional end date:

Hans Vehof MSc Assessment of news messages about innovative therapies for Parkinson’s disease 2015-2019

Background & research question The potential to access online news about innovative therapies (NIT) for Parkinson’s disease (PD) is large and wide. PD patients have a need for knowledge in order to manage their situation and prepare for the future.

Former studies show that health information seeking behavior is related to affective outcomes such as hope, anxiety, fear and distress. Furthermore, information seeking has an effect on increased perception of control, informed decision making, health behaviors and adherence to treatment.

Poor medication adherence is a complex problem and is associated with a variety of risk factors. Depressed PD patients have an increased risk to nonadhere. Greater knowledge of PD is found to be associated with better adherence. Conversely, adherence may decrease as a result of higher education giving patients more capacity to challenge health provider opinion.

The theory of news values describes why a Parkinson disease related topic is newsworthy and is therefore published by media. The value of news increases with the number of news factors that are accumulated by an event. If the resulting total news value of an item is higher, the changes for publications are higher.

This research project focuses on the question: "What are quantity, cognition and affection related characteristics of news about innovative treatments for Parkinson’s Disease and in what way do they, possibly, affect patient adherence intentions?”

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Design/methods In association with the Radboud University Nijmegen Centre for Language Sciences, four studies are scheduled.

1. Long-term quantitative trends of NIT publications are assessed 2. A content analysis of objective and affective text fragments in NITs for PD is performed.

3. Quantitative patient interaction on social media is measured in relation to developmental phase of the NIT 4. A vignette experiment provides insight in possible relations between objective and affective text fragments and patient expectations, knowledge and adherence intentions.

Main results to date Recently, the assessment of long-term quantitative NIT trends was started. First results are expected In December 2015.

Discussion To date, no research has been performed on qualitative or quantitative characteristics of news messages about innovative treatments for chronically ill patients. Furthermore, no information is available about the impact of messages with varying cognitive and affective characteristics on patient expectations and intentions.

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RESEARCH GROUP PROCESS INNOVATION IN PHARMACEUTICAL CARE Pharmaceutical processes

1st Author: 2nd Author: Title:

Provisional end date:

TuÄ&#x;ba Ă&#x2021;oban B Health Bas Steunenberg PhD DIKSAP research study (Prevention of diabetes by a group of community pharmacies in the east of the Netherlands: a lifestyle intervention RCT 2019

Background & research question The research group Process Innovation in Pharmaceutical Care is developing a research study to delay the diagnosis of diabetes mellitus type 2 (DM2). This will be done with innovative state of the art lifestyle interventions. The aim of the study is to increase autonomy of high-risk patients DM2, and to decrease their risk for developing DM2 by using the innovative DIKSAP protocol.

Design/methods The study is conceived as a randomised controlled trial (RCT). The organisation of the study is as follows. First of all, people will be asked to complete a (validated) questionnaire to determine their risk profile for DM2. People with a high questionnaire score will be referred to their GP, in order to determine whether the diagnosis DM2 should be made (fasting blood glucose, HbA1c).

After determining their risk profile, people with a relatively high risk to develop DM2 will be invited to participate in the study. Subsequently, participants will be divided in an intervention group (n=60) and a control group (n=60). Participants in the intervention group will get support from a lifestyle consultant (their own pharmacist) and will be subjected to the lifestyle interventions. These lifestyle interventions will consist of e.g. a healthy diet and physical activities. The control group will merely get written information about the positive effects of healthy diet and physical activities on their risk to develop DM2 (usual care).

Both groups will initially be followed for 2 years. At the end of this period, researchers are going to compare the results of both groups and to determine the effectiveness of the lifestyle interventions. Main outcome measure will be the delay of DM2 diagnosis. To test the logistic and the implementation of the research study, the researchers will perform a pilot in September 2015.

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Main results to date The pilot will start in September 2015. After completing the pilot, the research study will be started in 2016.

Discussion The study will be carried out by a group of community pharmacies in the east of the Netherlands (region Salland). The results of the study are not generalisable for the pharmacies in the Netherlands. The study can be regarded as a pilot that will provide an initial indication of the implementation possibilities of this innovative idea in the Netherlands.

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RESEARCH GROUP PROCESS INNOVATION IN PHARMACEUTICAL CARE Pharmaceutical processes

Author: Title:

Provisional end date:

Rik Ensing PharmD MSc HomeCoMe programme: improving medication management post-discharge in hospital-to-home care transitions by pharmacists October 2016

Background & research question Adverse drug events (ADEs) and other drug related problems (DRPs) are common in all healthcare settings. For patients, ADEs generally are the most invasive type of DRPs. However, other DRPs, such as under-prescribing or nonadherence, may also result in patient harm, leading to unplanned hospital (re)admissions. Moreover, several studies indicate the occurrence of a high number of readmissions in the days to weeks following discharge.

Although a guideline on transfer of drug related information has already been developed in the Netherlands, both hospitals and primary care providers are still struggling with its implementation. In addition, it is questionable whether it suffices to provide patients with information on medicine use at discharge only.

Previous studies, however, used interventions within the hospital or within the community setting only, which could still result in discontinuity of care. Thus, it seems likely that the reduction of DRPs, improvement of patientsâ&#x20AC;&#x2122; medication knowledge, and adherence are most effectively addressed in a multifaceted integrated transmural intervention.

Pharmacist interventions have proven effective in reducing the number of DRPs and ADEs. By introducing a home-based medication management programme within the first week after discharge, DRPs could be effectively prevented: patients are kept from slipping back into old medication routines, and the rise of new problems may be countered, such as emerging ADEs due to medication changes made during hospitalisation.

Therefore, the main objective of this study is to investigate the capability of a Home-based Community pharmacist-led Medication management (HomeCoMe) 88

programme to identify DRPs (including suboptimal medication adherence, lack of knowledge, and ADEs) in recently discharged patients.

Design/methods A prospective cohort study with a nested case control analysis will be performed. 150 patients will be included to receive an in-hospital medication reconciliation programme, complemented with a pharmacist home visit. The follow-up is 6 months. Possible DRPs will be identified during the home visit.

The community pharmacist will perform onsite action or will contact the responsible physician to solve any identified ADE or other DRP. Main results to date All 150 pharmacist home visits have taken place and initial analysis will be started by the end of 2015.

Discussion This study proposes an innovative approach for preventing early readmissions and managing post-discharge DRPs (including ADEs), an issue in healthcare with a known clinical as well as economic burden. Thus far, of the interventions shown to be effective, most have had both an in-hospital and a posthospitalisation component. Therefore, we think the integrated care plan in the HomeCoMe study, incorporating an in-hospital medication reconciliation and review programme which is complemented with a home-based medication management programme, has the potential of significantly improving patient safety, reducing healthcare costs, and contributing to optimizing current clinical practice regarding care transitions.

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RESEARCH GROUP PROCESS INNOVATION IN PHARMACEUTICAL CARE Pharmaceutical processes

Author: Title:

Ellen Molewijk PhD Quality of life, activities daily living, symptom history and satisfaction with treatment and care in treated hypothyroid patients

Background & research question Hypothyroid patients have few treatment options. A part of patients seem to keep complaints, despite replacement therapy and 'normalcy ' of blood values.

According to the Dutch NHG standard, levo-thyroxine (T4) is the preferred treatment. Titration of the dose is based on the TSH and sometimes on the FT4 value. It is not known how satisfied hypothyroid patients are with their medication and care.

The objective of this project is to research the nature and extent of persisting complaints in treated hypothyroid patients, as well as the satisfaction about treatment and care they receive, in order to optimise future care.

Design/methods Data was collected in a national survey using Limesurvey for hypothyroidism patients 18+ years of age who use replacement therapy for longer than half a year. Patients were approached through mailings by the Thyroid Organisation Netherlands (SON, patient association), posts on thyroid websites (SON, VGNS), Facebook and Twitter, and by posters and flyers at general practitioners, pharmacies and hospitals. In addition, a control group of persons of 18+ years without thyroid disease were included for reference. Frequencies, correlations and non-parametric statistics of patient responses compared to control were done using SPSS. Main results to date An interim analysis on 1,030 (of which 700 full) patient responses and 206 control responses indicates that daily functioning and quality of life are significantly reduced in patients compared to control subjects. Patients also 90

exhibited significantly more symptoms than controls. Patients were fairly happy with their medication. Outliers in the negative sense were Thyrax and generic levo-thyroxine sodium. Outliers in the positive sense were the natural thyroid preparations Thyreoidum and Armour. The satisfaction with the healthcare providers shows major differences. An important source of dissatisfaction is the provision of information about the disease and the treatment; another is the extent to which patientsâ&#x20AC;&#x2122; complaints are taken seriously.

Discussion These interim results on daily functioning and quality of life indicate that treated hypothyroid patients have not recovered, despite the replacement therapy they received. This ties in with some articles and discussions on patientsâ&#x20AC;&#x2122; forums, but not in the general view of regular doctors assuming full recovery after treatment according to the Dutch NHG standard. The satisfaction of hypothyroidism patients can be improved by better medication and more adequate information about the disease and treatment.

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RESEARCH GROUP PROCESS INNOVATION IN PHARMACEUTICAL CARE Pharmaceutical processes

Author: Title: Provisional end date:

Esther du Pon MA DESTINE â&#x20AC;&#x201C; Diabetes Education & Selfmanagement To INcrease Empowerment 2017

This PhD project investigates the effects of group education programme PRISMA on the use of an online care platform, communication with the practice nurse, and adherence to diabetes medication. A total of 250 patients with type 2 diabetes treated in primary healthcare will be followed in a randomised controlled trial for two years.

DESTINE is a collaboration between three partners: Utrecht University of Applied Sciences, Diabetes Centre Zwolle and Medrie Care Group.

Background & research question The prevalence of diabetes mellitus type 2 (T2DM) is strongly increasing. The increase in healthcare providers cannot keep up with the growing number of patients. Eventually, this may result in a decrease in available face-to-face time.

Constraints on the growth of healthcare costs will further restrict the possibilities to spend adequate time per patient. Therefore, diabetes care requires a decrease in the workload per patient for care providers. This implies the necessity of alternative forms of support, treatment, and patient selfmanagement. This study investigates the effects of the PRoactive Interdisciplinary Self-Management training (PRISMA), a way to improve selfmanagement skills in patients with T2DM. PRISMA was developed by the VU University Medical Centre for T2DM patients. It is based on the DESMOND programme, which has been developed in the United Kingdom. In the PRISMA training, patients are encouraged to set personal goals and formulate a realistic action plan. Subsequently, these plans are followed up during routine clinical check-ups by the diabetes care provider. We investigate the effects of PRISMA on 1) the use of the e-Vita care platform, 2) the communication with the practice nurse and 3) adherence to diabetes medication.

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Design/methods We performed an RCT and included 250 T2DM diagnosed patients in the region of Zwolle treated in primary healthcare. A total of 125 participants attended PRISMA before they gained access to the e-Vita platform, while the other 125 participants only gained access to the e-Vita platform without prior PRISMA. Participants are followed for two years. The use of the e-Vita care platform will be monitored. At four time points, questionnaires will be completed. Clinical measurements will be collected as part of usual care. The consultations with the practice nurse during the study will be recorded by an unmanned camera and analysed on information exchange.

Main results to date The first results of DESTINE will be available in 2016.

Discussion As a result, we expect a change in patients’ behaviour: patients will be more involved in their treatment, and increasingly behave as active partners in their own care. This increased ‘empowerment’ of patients should in the end result in better self-management, improved self-reliance of, and more autonomy for patients with T2DM, a reduction of medical care utilisation, less workload for care providers and, as a consequence, a reduction of the total costs of care.

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RESEARCH GROUP PROCESS INNOVATION IN PHARMACEUTICAL CARE

Author: Title:

Provisional end date:

Audrey Meulendijks MSc PAtient Self ReliAnce to Prevent venous Leg Ulcers (PARAPLU); PhD proposal to stimulate secondary prevention in chronic venous disease (CVD) 2018 or 2019

Background & research question Chronic venous disease (CVD) is a common progressive condition that expresses several symptoms that in most cases sequentially appear: reticular veins, varices, oedema, skin changes and eventually a venous leg ulcer (VLU). Age, obesity and (venous) hypertension are known risk factors. The average time from CVD diagnosis to a VLU is five years. In the past decade the incidence of patients with CVD symptoms almost doubled. Treatment is based on symptom relief and lifestyle advice, including (leg) exercise and weight loss. However, CVD care is not a continuous process. Symptoms are treated and lifestyle advice is given, whereupon a CVD patient leaves the care system until the next symptom occurs, signalling a more severe stage of CVD. An increase in CVD severity is associated with a significant decrease in diseasespecific quality of life (QoL). Health related QoL (HRQoL) in patients with a healed VLU is not significantly higher than the HRQoL in patients with an active VLU. This emphasises the importance of preventing VLUs. Nowadays, most research in CVD prevention and self-management focuses on VLU healing and preventing VLU recurrence. Unfortunately, no studies were found as yet that investigate prevention or self-management in earlier stages of CVD to prevent disease severity. In other chronic illnesses, like diabetes, prevention and selfmanagement is well studied and implicated to prevent a diabetic foot ulcer.

The aim of this study is to investigate the influence of patient centred and care related factors on the prognosis of CVD. This should lead to a focused preventive self-management programme to increase the effectiveness and efficiency of preventive CVD care.

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This study is relevant for all healthcare providers involved in CVD care. However, it is particularly relevant for (homecare) nurses and skin therapists since they probably see (undiagnosed) CVD patients more often than general practitioners and dermatologists. Besides, educational programmes like nursing schools and skin therapy aim at evidence based practice.

Which patient centred and care related factors influence the prognosis of CVD and the quality of life of CVD patients, and to what extent, in an adult (age >45) Dutch population?

Design/methods Literature review • Which patient centred and care related factors are known from the literature to be associated with CVD severity?

Qualitative study • How do CVD patients aged >45 experience CVD care and CVD selfmanagement in the Netherlands?

•

How do healthcare givers involved in CVD care experience CVD care and CVD self-management in the Netherlands?

Mixed methods, retrospective and prospective cohort study • Which patient centred and care related factors are associated with CVD severity in a Dutch population aged >45?

•

Which patient and care related factors are associated with the HRQoL of CVD patients aged >45 in the Netherlands?

Randomised controlled trial (not in PhD period) • What is the effect of a self-management programme in combination with preventive compression therapy compared to invasive therapy without a selfmanagement programme and/or compression therapy in the prevention of the deterioration of CVD in an adult (age >45) Dutch population?

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RESEARCH GROUP PROCESS INNOVATION IN PHARMACEUTICAL CARE

Author: Title: Provisional end date:

Femke de Vries MSc Integrated care in patients with acne vulgaris July 2019

Background & research question Approximately 90% of adolescents are dealing with some type of acne. A large number of these individuals seek professional help from one of the disciplines that the Dutch healthcare system recognises for dealing with acne care provision. In this ‘integrated care’ (Dutch: ketenzorg), patients first encounter primary care general practitioners or skin therapists, the latter due to direct access. Usually, only general practitioners are allowed to refer patients to secondary care dermatologists. However, the Dutch integrated acne care in its totality has not been properly studied before. Literature that is available on this subject only describes small parts of the pathway. It demonstrates that the integrated care pathways which patients tread are not always functioning sufficiently. For example, most of the skin care provision turns out to be performed by more expensive and higher work loaded general practitioners (82%). Another example of inadequate integrated care is the lack of scientific evidence for integrated care pathways, and in particular the added value of skin therapy within the integrated care.

Therefore, there is a need to obtain a complete overview of how the current Dutch integrated care is organised. What are bottlenecks within the acne care processes between different care providers? What are patients’ perspectives, needs and concerns during treatment? Mapping the integrated care processes properly and from all angles creates a much-needed overview that may contribute to improving the effectiveness and efficiency of acne care. In addition, scientific evidence is needed to demonstrate the added value of the integrated care treatment paths within the acne domain, and the role of skin therapists in the integrated acne care.

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Main research question: Which factors play a role in, and what is the added value of integrated care for patients with acne vulgaris in enhancing the effectiveness and efficiency of the care provision?

Design/methods First, a systematic literature review will be conducted, involving existing evidence that demonstrates the way in which current Dutch integrated care is organised. Secondly, an interview based qualitative study will be conducted to gain insights into perspectives, concerns, experiences and opinions of all involved parties within the acne domain. Third, a two-armed randomised controlled trial will be conducted to test the added value of skin therapy to regular therapy from general practitioners and/or dermatologists. The intervention group consists of acne patients who receive dermatological treatment or treatment from a general practitioner, complemented by skin therapeutic treatment. Patients in the control group receive regular acne treatment from a dermatologist or a general practitioner without skin therapeutic treatment. The main outcome variables that will be measured are the decrease in the number of acne lesions, patient satisfaction, health related quality of life and patientsâ&#x20AC;&#x2122; adherence.

Main results to date First results are expected in March 2016.

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RESEARCH GROUP SPEECH AND LANGUAGE THERAPY Professor Ellen Gerrits

The ability to speak, listen, read, and write is so common that we do not realise what impact it can have when these abilities do not come naturally.

Communication through language and speech is essential for interpersonal contact and participation in society.

The mission of the Speech and Language Therapy research group is to optimise communicative functioning of children and adults with speech and language disorders, leading to more autonomy and self-management in daily living. With our research projects, we want to expand the body of knowledge on effective interventions for prevention, cure and care of communication disorders. The perspective of the individual patient is leading in this.

There are two research lines: 1. Prevention of speech and language disorders • PRiL: Speech and language therapy in child healthcare • Child healthcare professionals’ questions about developmental language disorders • TUK: Usability of language screening in child healthcare 2. Evidence Effective Cure and Care • Development of instruments o ENGAGE: development of a patient reported outcome measure for communicative functioning o SAQoL-39nl: psychometric evaluation of the Dutch quality of life questionnaire for patients with aphasia o Adaptation of the Boston Naming Test for patients with aphasia • Intervention studies o The effect of vocabulary training with semantic scripts versus care as usual on word learning of toddlers with language impairment o The effect of school programme ‘Met Woorden in de Weer’ on word learning of children with specific language impairment o IntervenTOS: Predicting outcome of speech and language therapy in children with specific language impairment Teaching The knowledge generated by our research projects is translated into courses of the bachelor’s programme in Speech Therapy, Nursing, Digital Communication and Multimedia Design. The research group also participates in the master’s programme Clinical Language Speech and Hearing Sciences of Utrecht University.

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Sharing knowledge Our research projects are conducted in collaboration with professionals in the field of speech, language, voice, hearing and swallowing disorders. The Royal Auris Group is one of our key research partners, together with Child Healthcare (GGD) Hollands Midden, and the Dutch Association of Speech and Language Therapy (NVLF). To disseminate our research results, we organize workshops and conferences (e.g. TaalStaal 2015), and participate in working groups together with professionals such as the working group Clinical Guideline Speech and Language Therapy in Developmental Language Disorders.

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RESEARCH GROUP SPEECH AND LANGUAGE THERAPY Evidence Effective Care

Author: Title:

Mieke Beers PhD Research theme ‘Phonological intervention in children with speech and language disorders’

Background & research question Children with phonological impairments often have severe speech problems that may affect their intelligibility, leading to constraints in their communicative functioning. These children make up a major part (ca. 75%) of a speech and language therapist’s (SLT’s) caseload. SLTs experience difficulties in determining specific treatment goals and methods for children with severe speech problems.

This is mainly due to the diverse aetiologies of speech disorders. Each type of speech disorder requires a specific treatment method. The goal of this research theme is to make intervention for children with severe speech problems transparent and accessible for all professionals. In particular, the research is focused on one type of speech disorder: that of phonological problems. How do SLTs differentiate this from other types of speech disorder, and which intervention goals and procedures are the most appropriate?

Assessment of specific treatment goals involves eliciting single word pronunciations or analysis of connected speech in spontaneous speech samples.

SLTs and other professionals may use a computer program (FAN, Fonologische Analyse van het Nederlands) for assessment and as a reference for goals for treatment. Based on words from a spontaneous speech sample it provides a comprehensive analysis of a child’s phonological abilities and problems. This program is now available as a web-based procedure: FAN 2.0.

The projects of this research theme focus on further developing this web-based procedure FAN 2.0 and its implementation.

1) Implementation by optimising user friendliness and usability 2) Expansion with other, related applications, in particular the Phonological Mean Length of Utterance (PMLU).

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3) Inclusion of existing, or development of new phonological therapy procedures Design/methods The research theme consists of the following on-going and planned projects 1) Implementation of web application: through focus groups/interviews/questionnaires of (first time) users investigation of the following aspects: What are the bottlenecks? What are usersâ&#x20AC;&#x2122; preferences with respect to use and design?

2) Expansion through other phonological applications: quantitative research with the application of the phonological word measure PMLU in normally developing and phonologically impaired children. With PMLU the phonological development of normally developing children can be measured, but clinical use in phonologically impaired children is still under investigation.

3) Use of website in research: standardising studies, application in effect studies of phonological therapy, application with specific groups such as hearing impaired children or multilingual children.

Results The first project results concern the implementation of the phonological word measure PMLU, which is aimed at determining developmental levels of children with phonological impairments. The measure has been shown to be effective in detecting developmental delay. Further research is aimed at the clinical applicability: what is the optimal sample size in number of words for the determination of an individual childâ&#x20AC;&#x2122;s PMLU-score? Also, research will be aimed at the validity and the discriminatory ability of this measure.

Discussion The optimisation of the user friendliness and usability of phonological assessment with this web based procedure will ultimately make it easier for professionals to determine specific treatment goals and methods for children with severe speech problems. Through innovation of technological procedures for assessment and treatment the projects intend to enhance the technological support for professionals involved in this type of intervention.

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RESEARCH GROUP SPEECH AND LANGUAGE THERAPY Evidence Effective Care

Author: Title:

Provisional end date:

Gerda Bruinsma MSc Effectiveness of speech-language therapy in young children with developmental language disorders 1 January 2018

Background & research questions This study will investigate the effectiveness of speech and language therapy in preschool children with developmental language disorders and special education needs.

A developmental language disorder severely affects communication skills and has adverse effects on all aspects of a young childâ&#x20AC;&#x2122;s development. Little is known about the effectiveness of different service delivery models combining therapy and education in children with developmental language disorders.

Results of effect studies are contradictory, and, in most cases, aimed at older children. There is also a lack of research on child and therapy factors influencing effectiveness.

Research questions 1. What is the effect of speech and language therapy on language performance of 4 and 5 year old children with severe developmental language disorders in different educational settings?

2. What child factors, therapy factors, and educational factors are predictors of growth in language performance?

3. What is the grammatical development of children receiving speech-language therapy at schools for special education for the duration of one year?

4. What is the efficacy of Communicative Language Intervention on grammatical development, in comparison to usual speech-language therapy in children attending schools for special education?

Design/methods This study consists of two parts.

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Part 1: Cohort study The effect of speech-language therapy and educational support on language performance will be measured during one school year. A solid and efficient monitoring system will be designed to collect data on language skills and influencing factors.

200 children, aged 4 and 5 years, scoring ≥ 1,5 SD below the mean on standardised language tests will be included. Measures on standardised language tests will be collected from their files (at Time 0 = start of the school year and Time 1 = end of the school year). Child, therapy and educational factors, such as intelligence, socioeconomic background, amount and frequency of intervention and group size will be registered. Through regression analysis, predicting factors for language growth will be determined.

Part 2: Effect study Efficacy of Communicative Language Intervention (CLI, Van den Dungen, 2007) will be studied using a time-series design. 24 Children on different schools for special education will be randomly assigned to an intervention group and a control group. Measurements of grammatical development in spontaneous language will be collected in short intervals during one year. On Time 1 - Time 5 all participants will be receiving usual care. Subsequently on Time 6 - Time 8 the intervention group will receive CLI according to a protocol. Measurements on Time 9 and Time 10 will take place after the ending of the CLI intervention. The growth curve of each child in the intervention group will be analysed, making each child serve as its own control. In addition, growth curves of the intervention group and the control group will be compared.

Main results to date Part 1: cohort study • 220 children are included • Data collection T0 is ready

Part 2: effect study • Preparations • Pilot study with spontaneous language (proposed outcome measure). Data analysis has started.

The results will lead to improvement of care and education that is offered to children with developmental language disorders.

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RESEARCH GROUP SPEECH AND LANGUAGE THERAPY Evidence Effective Care

Author: Title:

Lizet van Ewijk PhD Research theme “Communicative functioning in adults with acquired language disorders”

Background & research question Each year, between 34,000 and 41,000 people in the Netherlands suffer a stroke. In a review of prevalence and incidence of stroke in Europe, Truelsen, et al., (2006) show, unsurprisingly, that incidence and prevalence rates of stroke increase with age. The World Health Organisation (WHO) stroke prevalence estimate for the Netherlands range from 135 per 100,000 for 25-34 year olds to 18,000 per 100,000 for 85+ year olds. The authors suggest that the proportion of the (Western European) population aged 65+, in which most stroke events occur, will increase from 20% in 2000 to 35% in 2050, indicating that the number of stroke survivors is likely to increase dramatically over the next few decades. Furthermore, as stroke mortality rates decline, there is an increase in the number of individuals surviving stroke with residual impairments and disability. One of the most devastating effects of stroke is the development of aphasia. Approximately 30% of stroke sufferers develop this language disorder, which severely affects the individual’s ability to participate in social activities and to receive social support. Between 62% and 70% of those affected will develop clinical depression.

The aim of research on adult language disorders at the SLT research group is to improve communicative functioning in this population. The focus of the research projects up to date have been in line with the second research line of the SLT research group: evidence of effective care.

Some examples of projects currently running are: • The development of the Stroke and Aphasia Quality of Life Scale (SALQoL39nl)

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• •

The development of a new Naming Test Feasibility of a communication rehabilitation program at the stroke unit (in collaboration with the research group Chronic Illnesses, principal investigator Thóra B. Hafsteinsdóttir)

Results The SAQoL-39nl has been translated and its psychometric properties have been investigated. Part of the norm data have been collected, data collection is expected to be finished by the end of 2016. The instrument and manual are available for use (open access). Several (inter)national papers have been published and are under review.

Collaborations have been formed with a.o. Revalidatiecentrum de Trappenberg, onderdeel van Merem behandelcentra; the Research group Chronic Illnesses (HU) and ENT and KGW UMCU.

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RESEARCH GROUP SPEECH AND LANGUAGE THERAPY Evidence Effective Care

Authors:

Title: Provisional end date:

Lotte Versteegde MSc; Inge Zoutenbier MSc; Jenta Sluijmers MSc; Ingrid Singer MA; prof. Ellen Gerrits Evidence summaries of speech and language therapy 2016

Background & research question The aim of this project is to provide five ‘easy-to-read’ evidence summaries regarding the effectiveness of speech and language therapy. The purpose of these documents is to support decision making, improvement of quality and evidence based practice in the clinical practice of the speech and language therapist. These documents can also be used by stakeholders (healthcare insurance, local government) and patients. The five evidence summaries provide brief information regarding treatment of the following communication disorders: specific language impairment (children), stuttering (children and adults), speech disorders/verbal dyspraxia (children), aphasia (adults) and voice disorders (children and adults).

The research question of this project is: ‘what is known regarding the effectiveness of speech and language therapy nationally and internationally?

The project is commissioned by the professional association for speech and language therapists in the Netherlands (NVLF).

Design/methods A literature search is conducted in medical databases like PubMed, PsychINFO, EMBASE and CINAHL. Only studies from Western countries with a comparable healthcare system are included. The strengths and weaknesses of the relevant evidence are reviewed by means of a critically appraised topic (CAT). Recent studies with the highest available methodological quality (systematic reviews, RCT’s, meta-analysis) are included. Cochrane quality assessment tools for quantitative studies are used. Therapy recommendations based on the best available evidence are summarised in a short document (A4). Experts are consulted for key publications and triangulation of findings.

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Main results to date Currently, the study is in progress. No results are available yet. The evidence summaries will be distributed to relevant audience by the NVLF.

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RESEARCH GROUP SPEECH AND LANGUAGE THERAPY Research Priority Area Healthcare and Technology

Author: Title: Provisional end date:

Ingrid Singer MA The development of a checklist to assess tablet games on usability in language therapy July 2015

Background & research question Speech-language therapists (SLTs) increasingly use tablet games (TGs) in the treatment of children with specific language impairment. They find that using TGs has a positive influence on children’s attention and involvement in therapy.

This is an essential requirement for successful therapy aimed at improving communicative functioning. Because most TGs are not specifically developed for language therapy, SLTs need to select usable TGs themselves. The aim of the study was to determine which characteristics make a TG useful for language therapy and to develop a valid and reliable Dutch checklist to assess the usability of TGs for language therapy.

Design/methods The study had a mixed methods design. The participants were 41 SLTs working with children and using TGs in language therapy. The checklist was constructed based on qualitative data from two focus groups about characteristics that make TGs useful for language therapy. In the quantitative part of the study, inter-rater reliability was assessed by comparing the assessments of three independent raters of 50 TGs. Construct validity was determined by principal component analysis (PCA).

Main results to date The study resulted in a checklist consisting of 26 dichotomous items, based on seven main themes and 21 subthemes emerging from qualitative data. Thirteen items showed poor agreement (Fleiss kappa < .20). After removing these items, the total checklist had a fair inter-rater reliability (ICC 0,392). PCA resulted in a three-factor solution. ‘Suitability for therapy’, ‘attractiveness for the child’, and ‘practical characteristics’ are underlying theoretical constructs of the checklist.

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Discussion The checklist with 26 items has a good content and face validity. Removal of 13 unreliable items results in undesirable loss of content. Therefore, revision is needed to improve the reliability of 13 items and the validity of the checklist as a whole. The items of the checklist must be reformulated to decrease interpretation differences. The answering scale has to be changed to a Likert scale, in order to gain a more subtle evaluation of characteristics of TGs. Additionally, reliability and validity of the revised scale has to be assessed. This study has provided valuable insight into the characteristics that make a TG suitable for treatment according to SLTs. After item revision and re-assessment of measurement properties, the checklist can be implemented and used by SLTs.

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OTHER

Research Priority Area Healthcare and Technology

Author: Title:

Janna Bruijning PhD, bachelor studies Eye care (Optometry & Orthoptics) Visual functioning and lifelong participation

Background & research question Eye care bachelor studies (i.e. Optometry and Orthoptics) want to focus more on doing practically oriented research. Therefore, both departments are currently developing a joint research programme to create a body of knowledge. In this research programme, professional lecturers and students will participate in practically oriented research, under supervision of scientific researchers. This will contribute to better professional teachers, more critical students, and improved quality of eye care due to innovation of professional practice. The first step in developing a research programme is determination of the focus of that programme. Subsequently, this focus will be further refined by associated research lines. Next, concrete research projects will be explored.

Design/methods The research focus and associated research lines were explored in several brainstorm sessions with lecturers from the department of Eye care with a background in doing research (e.g. PhDs and PhD candidates). The content of the research focus was further discussed and refined with lectors and researchers from the Centre for Innovation in Healthcare to guarantee that the research focus matches the umbrella themes.

Main results to date The focus of the research programme â&#x20AC;&#x2DC;Visual functioning and lifelong participationâ&#x20AC;&#x2122; can be summarised as follows: The aim is innovation of (health) care by developing knowledge and tools for healthcare professionals to optimise visual functioning and lifelong participation.

The starting point is to focus on individual needs and abilities of persons, to 114

stimulate and preserve independence, autonomy and self-management, as well as social and community participation. Moreover, the efficiency and cost effectiveness of care will be taken into account.

The research programme is multi-/interdisciplinary oriented and focuses on visual processes in relation to physical, cognitive, social and emotional aspects and the interactions between humans and their environment. There will be special attention for general and instrumental (digital) activities of daily living, visual comfort and safety.

The following four research lines have been formulated to make this more explicit: 1) Prevention (precaution, self-management, community care) 2) Multiple (complex) care 3) Optimising visual functioning during complex tasks and/or for people with sub-normal vision 4) Optimising patient-centred eye care Discussion The development of this research programme is an on-going process. Next step will be to explore possible research projects. As practically oriented research must be demand-driven, the professional practice will be involved in this process. Moreover, the research programme will be further integrated in the educational structure, so that lecturers and students will be more involved in practically oriented research. This will create a better connection of all parts of the triangle education, research and professional practice.

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Authors:

Title:

Babette Everaars, junior researcher Katarina Jerkovic PhD, senior lecturer Dental Hygiene Research projects in oral health for the elderly population

Provisional end date Two main projects regarding oral health for the elderly population are running.

The first is ‘oral healthcare for elderly, awareness among care professionals’.

This is a project subsidised by ZonMw. It started 1 December 2014 and will run for two years.

The second project will be fulfilled by a PhD candidate and is now in its preparation phase. We will apply for a grant from ZonMw; the deadline for application is 3 September 2015. The PhD project will take three to four years.

Background & research question Elderly retain their natural teeth more often. This brings about new and different problems. More complex dentitions, with advance restorations like implants, crowns and bridges, make it more difficult to maintain good oral hygiene at older age.

Moreover, the association between oral diseases and general health becomes clearer. For example, periodontitis is associated with cardiovascular diseases, pneumonia and diabetes.

To anticipate on these changes in the oral healthcare demand, new projects and research are needed. Many elderly are often care-dependent regarding their oral health, especially in long-term care facilities.

With the project ‘oral healthcare for elderly, awareness among care professionals’, we aim to increase awareness and knowledge among care professionals about oral health and consequences of bad oral health in relation to general health and wellbeing among elderly.

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In the PhD project, we will focus on preventing oral diseases in community dwelling elderly by using screening methods implemented in community care.

Furthermore, we want to investigate the role of oral health in assessing frailty in community dwelling elderly.

Design/methods The project ‘oral health care for elderly, awareness among care professionals’ will focus on two domains: 1) education for pre-care professionals and 2) education of existing care professionals. The education module about oral health was originally developed by the NPO (national program for elderly) and will be re-written and implemented for mbo and hbo nursery school programs.

For the PhD project, we want to apply for a grant from ZonMw in September 2015. We want to develop a screening and triage instrument for oral health, to complement an existing frailty screening (U-Care). Using a longitudinal follow-up study, we want to investigate what the role of oral health is in screening for frailty among community dwelling elderly.

Main results to date For the project a first symposium was organised in healthcare centre MaarnMaarsbergen. The aim of this session was to increase awareness of oral health in relation to general health. Several professions attended the session, e.g. doctors, nurses, physical therapists, dentists and caregivers. Moreover, the concept of the education module for nursery at universities of applied sciences is finished and stakeholders will provide feedback on it. The existing education module for mbo nursery has been adapted on didactics.

The first article that will be part of the PhD project is going to be submitted in the summer of 2015. The title of this article is ‘Probing problems and priorities in oral health among community-dwelling elderly in the Netherlands’. A poster presentation will be given on the 13th congress of Gerontology on 2 October 2015.

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INDEX Beers, M. 102 Bleijenberg , N. 18 Bloemen, M. 56 Boonzaaijer, M. 66, 68 Bruijning, J. 114 Bruinsma, G. 104 Cate, D. ten 10 Coban, T. 86 Dijk, M. van 20 Dikken, J. 24 du Pon, E. 92 Elbers, S. 74 Ende-Kastelijn, K. van der 58 Ensing, R. 88 Ettema, R. 12, 14 Everaars , B. 116 Ewijk, L. van 106 Gerrits, E. 108 Groot, J. de 54 Heneweer, H. 76 Houwelingen, T. van 42 Huisman, E. 36 Korpershoek, Y. 22 Jerkovoc, K. 116 Lalleman, P. 26 Lankhorst, K. 58, 60 Maren-Suir, I. van 66, 68 Meulendijks, A. 94 Molewijk, E. 90 Mueller-Schotte, S. 16 Nijmolen, P. 70 Nuysink, J. 64, 66, 68 Oosterhaven, J. 48 Outermans, J. 50 Pool, J. 72 Reinten, J. 38 Singer, I. 108, 110 Sinoo, M. 32 Sluijmers, J. 108 Sol, M. 62 Steunenberg, B. 82 Tilborg, M. van 34 118

Vehof, H. Versteegde, L. Vorrink, S. Vries, F. de Welbie, M. Zoutenbier, I.

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