Evaluation of Manchester Cancer/Macmillan Innovation Fund Project (PlanBe) September 2015-September 2016
Table of contents Project Details Executive summary Introduction Background Rationale National and regional context Local need Project milestones and timeline Governance Aims and objectives Methods and approaches Programme design Concepts and structure Content development Commissioning the website Developing and evaluation plan/data collection methods User involvement Communications plan Results Website analytics for the PlanBe platform Description of patient group Evaluation tools Impact of PlanBe Case study Communication between the clinical team and patients Impact on the clinical team Resources Discussion Recruitment to PlanBe Accessibility for all Information The extent to which the project fulfilled its aims Limitations Unanticipated outcomes Recommendations and implications References Acknowledgements Appendices and finances Appendix 1: Macmillan Logic Model: PlanBe Appendix 2: Focus group feedback reports Appendix 3: Activities added to schedule
3 4 5 5 5 6 6 7 8 8 9 9 10 12 15 15 16 17 17 17 17 18 28 28 29 30 30 30 30 31 31 32 34 34 35 36 36 37 37 38 38 Page 1 of 39
Appendix 4: Survey monkey analysis Appendix 5: Finances Appendix 6: Leaflets and booklets
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List of tables Table 1: Project milestones Table2: Anticipated outcomes Table 3: List of PlanBe domains and planned modules Table 4: Demographic information from About You questionnaire (n = 13) Table 5: Questionnaire distribution and response rates Table 6: How are you - Questionnaire Responses 1 Table 7: How are you - Questionnaire Responses 2 Table 8: QoL Responses -% of people who experienced difficulties in the previous week Table 9: QoL Responses - % of people experiencing "quite a lot" or "very much" difficulty Table 10: HADS - Experience of anxiety - in "case" ranges Table 11: HADS - Experience of depression - in"case" ranges Table 12: Responses to Feedback 1 & 2
7 9 12 18 19 20 20 21 22 23 24 25
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Project Details Project Title:
PlanBe
Duration of project:
September 2015 – September 2016
Project team members:
Project Lead: Dr Michael Leahy, Consultant Medical Oncologist Project Manager: Elizabeth Islam/Janette Farrell, Macmillan Survivorship Project Manager Project Team Lead: Ben Heyworth, Survivorship Network Manager
Contact details:
Dr Michael Leahy: michael.leahy@christie.nhs.uk/Ben Heyworth: ben.heyworth@christie.nhs.uk or 07917 628 672
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Executive summary The PlanBe project aimed to develop a prototype programme designed for patients with advanced stage cancer under the Living With and Beyond Cancer initiative. The programme re-frames the view that “it’s chemotherapy or nothing” and replaces it with an offer of a proactive self-care plan aiming to improve health and well-being, pro-actively manage stress and anxiety, build resilience and make wise choices about the use of complementary / alternative medicine. Within this framework, chemotherapy and other medical interventions can be seen as (an optional) part of a holistic plan. The anticipated outcomes were: increased patient self-activation; improved quality of life and survival; and improved patient experience. Delivering this programme through face to face clinical contact was seen as untenable due to resource constraints within the NHS (particularly if subsequently scaled up to reach a large number of patients). In addition, a programme that required additional attendances at the Cancer Centre was deemed likely unattractive to patients and carers when the goal was to reduce the medicalization of patient’s lives. Therefore, the project aimed to develop a platform that: patients could access from home; would direct them to seek out local resources in their own community, and, at the same time, would provide them with a degree of on-going support and encouragement. The resulting prototype, developed from the outset with input from patients and carers, includes a booklet and an interactive web-site where the benefits of self-care are explained and patients are encouraged to choose from a menu of options including physical activity, diet modifications, stress and anxiety management, complementary therapies, and resilience training. The programme includes on-going contact with patients though email, a blog, and electronic questionnaires (ePROMS). Once the prototype had been developed, recruitment to PlanBe was generally easy with 52 patients signing up to the programme between April and July 2016 (4 months). Feedback identified that PlanBe was easy to use and provided useful information, which people returned to. It was not possible within the scope of this project to confirm in detail the degree to which patients changed their behaviour as a result of the programme or whether this impacted on the clinical outcomes described above. At the end of the 1 year project, the underlying principles of the programme and its acceptability to patients have been confirmed. The project has identified several important areas that require further development including: accessibility for some patients; optimising engagement with the programme; developing the functionality for on-going support; and more formal assessment of impact in a wider patient group. PlanBe was successful at changing both patients and clinicians approach to living with cancer and increased communication about holistic care. It therefore provides an opportunity to move towards a more integrated approach to health care for this group of patients. Page 4 of 39
Introduction Background PlanBe is a Manchester Cancer/Macmillan Innovation Fund project initiated in September 2015 and running until September 2016, based at The Christie NHS Foundation Trust. The PlanBe programme has been designed for patients living with advanced stage cancer and aims to help them create a holistic self-care plan to run alongside any medical treatment for their cancer. PlanBe covers, diet, exercise, complementary therapies, mind and spirit and resilience/empowerment. It is delivered via a bespoke website, with hard copy produced for those without access to online facilities.
Rationale The inspiration for PlanBe arose from the many discussions with patients in clinic with advanced stage cancer about the optimal management approach, particularly where there is no curative therapy and where so called “palliative” chemotherapy offers only marginal benefit to a minority of those treated at the cost of significant toxicity and loss of quality of life. In these circumstances, treatment decisions can be extremely difficult: patient’s expectations are that “because I have cancer I must have a treatment” and no matter how carefully clinicians explain the pro’s and con’s of intervention, the choice may appear to patients that “it’s chemotherapy or nothing”. In the face of such a choice patients will, not surprisingly, often opt for something over nothing. In addition, faced with a perceived lack of management options from their oncologist, many seek out alternative therapies which are likely to be of completely unproven benefit, may be expensive and intrusive and sometimes are offered to deliberately defraud vulnerable people. Increasingly, however, the choice between chemo or nothing is being seen as a false dichotomy with evidence showing that attention to health and well-being, good symptom control and early engagement with supportive care services can be associated with not only a better quality of life but also improved survival. Various initiatives within established medical practice have developed to incorporate these benefits for cancer patients: examples include increasing importance given to early engagement with Palliative and Supportive Care services and the growth of Integrative Oncology as a new subspecialty. The PlanBe project references and acknowledges the influence of the emerging clinical field of Integrated Oncology. Integrated Oncology (IO) is an evolving approach to cancer care that uses selected, evidence-based complementary therapies, healthy lifestyle adjustment and well-being activities in conjunction with medical treatment to enhance quality of life (QoL) and symptom control, alleviate patient distress and reduce suffering. A systematic review of complementary and alternative medicine (CAM) use among cancer patients concluded that approximately 40% of patients use some form of CAM - usually self-selected and often not disclosed to their doctor (Seely, Weeks et al. 2012). Other recent reviews have outlined the importance of expanding cancer Page 5 of 39
treatment to include the promotion of overall long-term health for people with cancer, including weight management, physical activity and healthy diet (Denmark et al, 2012). This project combines health promotion, CAMs and conventional therapies to optimize well-being and QoL. PlanBe aims to test out an innovative way of improving patient experience, symptom control, quality of life and survival for those living with cancer by encouraging and promoting patient self-activation in addition to orthodox anti-cancer treatments. The project acknowledges that a principle barrier to implementation of a comprehensive holistic approach is the limitation of available resource for one to one delivered care; hence this project explores the use of an interactive website and electronic communication with patients to reduce the need for 1:1 clinical contact in the delivery of this aspect of their care. The aims and objectives of PlanBe include promoting self-activation to improve quality of life, symptom control, anxiety reduction, increase patient satisfaction and sense of empowerment/giving patients back control. In addition PlanBe aims to help give advice on how to make wise choices amidst many therapies on offer in cancer care, which make claims of benefit. PlanBe aims to be delivered with minimal face to face contact with professionals therefore to have limited impact on current service resources.
National and regional context The project concept links to key national aims and objectives relating to cancer care and the need for refocus on and better management of those living with cancer. These include the Achieving World Class Cancer Outcomes (National Cancer Task Force, 2012; National Cancer Survivorship Initiative: Vision, 2010) aim of transforming the approach to people living with and beyond cancer and promoting patient choice, independence and self-care and The Christie NHS Foundation Trust 2020 Vision and 5-year strategic plan 2014-19 aim of supporting those living with and beyond cancer and promoting self-care through innovation. Manchester Cancer’s Living With and Beyond Cancer Pathway Board reported in 2015 (Manchester Cancer LWBC Annual Report 2015) the need to identify the best way to support those facing living with cancer, ongoing treatment and a less certain future. More needed to be done to ensure all patients get the holistic care they need when living with and beyond cancer. The National Cancer Vanguard (2015) also includes a focus on survivorship, empowerment and support for those living with and beyond cancer.
Local need Research among patients attending one clinic demonstrated that many patients are already seeking out information on self-care. Data from a small survey of patients confirmed that 11 of 19 patients identified themselves as “regular users of complementary / alternative medicine� and the range of activities that may be included within the umbrella of IO i.e. diet, nutrition, exercise, stretching and flexibility, life style modification (particularly reducing harmful habits such as tobacco and alcohol use), non-pharmacological symptom relief, touch therapies (including massage, aromatherapy, acupuncture, and reflexology), hypnotherapy and mindfulness techniques. Page 6 of 39
The project concept was first presented, discussed and accepted at two patient focus groups: the Manchester Sarcoma Patient Support Group in May 2014 and the Christie Living With and Beyond Patient Reference Group in November 2014.
Project milestones and timeline In 2014 Macmillan Cancer Support awarded Manchester Cancer a £350,000 Living With and Beyond Cancer Innovation Fund to give Pathway Boards the opportunity to develop and test innovative ideas for improving the outcomes and experience of those who are living with and beyond cancer. PlanBe was one of thirteen projects to be accepted and was awarded funding for one year. A Band 7 Project Manager was appointed for 1 year, working with the Sarcoma team and Living with and Beyond Cancer network across The Christie. PlanBe is hosted by The Christie NHS Trust and has been piloted with patients with advanced stage cancer in Dr Michael Leahy’s sarcoma clinic. Table 1: Project milestones Milestone
Timeline
1. Recruitment of Project Manager
Sept. 2015
2. Develop PlanBe programme and website: a) Patient engagement b) Evidence review and concept/content development c) Commission website developer d) Develop evaluation plan e) Develop communications plan
Sept. 2015 - January 2016
3. Engagement and delivery a) Recruit patients to PlanBe b) Pilot Plan Be programme in Sarcoma Clinic c) Collation and analysis of interim data
February 2016 – July 2016
4. Evaluation and final report a) Collation and analysis of programme outcomes and measures b) Final report with sustainability/exit strategy
August 2016 – September 2016
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Governance The Band 7 Project Manager reported to clinical lead Dr Michael Leahy (Consultant Medical Oncologist). The project reported quarterly to the Manchester Cancer Living with and Beyond Cancer Board. In addition, the project provided regular updates to the Christie Living with and Beyond Cancer Committee and Patient Reference Group. The Project Team met weekly throughout the 12 month period.
Aims and objectives Aims of PlanBe: • To improve quality of life, symptom control, anxiety reduction, patient satisfaction (with service delivery) and potentially survival via improved access to information and self-management tools. • To promote patient self-activation. • To have minimal impact on current service resources, recognising that delivery based on face to face contact is not feasible due to lack of capacity.
Target group: The target group were patients attending Dr Leahy’s Sarcoma clinic, aiming to enrol a maximum of 100 patients.
Objectives: To develop a website and interactive patient interface to help patients build a personalised PlanBe programme, which will include: o
Self-registration and profile building
o
Library of information resources on exercise, diet and nutrition to selected complementary therapies, each with rationale, evidence base, guidance on how to incorporate into the plan and tips on goal setting and ongoing self-assessment.
o
A personal plan of activities chosen, in formats that facilitate sharing with carers, other patients and clinicians.
Development of evaluation tools via online surveys and questionnaires to registered participants, using tools such as the Macmillan Checklist, HADs questionnaire etc. Development of a social media presence including blog, podcasts, patient testimonials and discussion board. Co-creation of a project with people affected by cancer. Page 8 of 39
An evaluation logic model was produced for PlanBe (see Appendix 1), based on the Macmillan logic model and detailing inputs, outputs, outcomes (short to medium term) and longer term impact. Table 2: Anticipated outcomes Short to medium-term outcomes anticipated:
Longer-term impact anticipated:
Boost in wellbeing
Patients empowered, more in control of their circumstances
Reduction in anxiety levels
Patients derive therapeutic benefit of patient empowerment through selfmanagement
Participants feel better able to cope with symptoms/emotional consequences of treatment
Improved quality of life
Participants have better access to knowledge on what they can do to help themselves/feel informed about positive steps they can take To promote patient self-activation to help participants feel more in control/ feel better able to accept uncertainties about their condition/future Minimise impact on current service resources at the cancer centre
Methods and approaches Programme design PlanBe had a 6-month development phase in order to:
Develop the concepts and structure of the PlanBe programme Carry out evidence reviews on PlanBe content Meet with key advisors across The Christie NHS on content/concepts Commission a website developer, develop and launch the website Develop an evaluation plan and data collection methods Develop user involvement Develop a communications plan Page 9 of 39
The programme aimed to start recruiting patients in February 2016, looking to enrol a maximum of 100 patients and evaluate feasibility and acceptability of scheme.
Concepts and structure The PlanBe concepts were developed by Consultant Medical Oncologist Dr Michael Leahy as part of the original bid for funding to Macmillan Cancer. These were further developed by the Project Team which met twice weekly, and further tested during meetings with key advisors (see content development, below) a newly developed PlanBe Focus Group, which met in November 2015, January 2016 (and again in May 2016 after the PlanBe launch). The programme was developed to have 5 main elements: The PlanBe school: This element included information about the PlanBe library and the ‘PlanBe Compass’ which aims to help patients weigh up the claims of benefit of treatments or therapies on offer to them, involving basic information on evidence and clinical trials. In addition it includes information on the PlanBe ‘approval score’, where for each element of the PlanBe Library (for example the 5:2 diet, aromatherapy) we would give a score from 0-3 based on evidence of benefit. The school also explains briefly the benefits of the PlanBe library.
Figure 1: A screenshot of the PlanBe school
Preparation stage: This is to enable participants to plan and prepare for the changes they want to make. It involves advising the patient on keeping a food diary or activity diary for 1 or 2 weeks, taking time to read through the library etc. Commitment: In this step, PlanBe advises the patient to take a step back and think about how much time they have in a given week to spend on their PlanBe programme. The PlanBe Library: This is the main body of PlanBe – a library of guidance and information on a range of activities, split into diet and nutrition, body (including physical activity), mind and spirit Page 10 of 39
complementary therapy, resilience and empowerment and ‘your medical treatment’. Content was developed within each section (see content development, below), covering consistent headings such as overview detailed description, evidence, score, who should be careful, how to implement, where to find a therapist etc.
Figure 2: A screenshot of the PlanBe library
Building your PlanBe schedule: This step includes advice on building a daily or weekly schedule; the PlanBe website incorporates a schedule builder and daily calendar.
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Figure 3: A screenshot of the PlanBe schedule
The main outputs of the PlanBe programme were therefore: -the PlanBe website (and also a project blog and podcasts – see ‘communications’, below) - a PlanBe booklet (see Appendix 6) - a PlanBe leaflet and registration form (see Appendix 6)
Content development The development of PlanBe involved developing detailed content for each of the 6 domains: diet and nutrition, body, complementary therapies, mind and spirit, empowerment and ‘your cancer therapy’. A plan was produced outlining content needed within each domain, as demonstrated in the table below: Table 3: List of PlanBe domains and planned modules Domain Empowerment
Body
Module PlanBe Stepping Stones Resilience training Early engagement Physical Activity Flexibility and Stretch Pandiculation Sauna Massage Page 12 of 39
Domain
Mind and Spirit
Diet / Nutrition
Complementary therapy
Module Yoga Pilates Alexander Technique Feldenkrais Sleep hygiene Fatigue Management Counselling/CBT Breath Mindfulness / MBSR Meditation Music (resilience tracks) Spirituality / Faith / Prayer / Church Positive visualisation Healthy diet Weight loss (for the overweight) Weight maintenance (if underweight) Exclusion - sugar 5-2 diet (fasting) Exclusion - fat Exclusion - dairy Exclusion - meat Macro-biotic "Anti-cancer" and "commercial" diets Supplements Megavitamins Acupuncture Homeopathy Herbal medicine Essiac Amygdalin / Laetrile - apricot extract Chinese traditional medicine Qi Gong / Chi Gong Faith Healing Therapeutic touch Ayurvedic medicine / Indian traditional medicine Shiatsu Kinesiology Aromatherapy Reiki Reflexology Page 13 of 39
Domain
Your Cancer Therapy
Module Osteopathy Craniosacral therapy Chiropractic Naturopathy Bach Flower Remedies Chemotherapy Radiotherapy Supportive care medication Co-medication for other conditions Non-pharmacological symptom control Unconventional medical treatments Hyperbaric Oxygen Detoxification Metabolic cocktail IV Vitamin C Hyperthermia Gerson Therapy
In addition, each module or activity was given an indicative approval score by the project lead and consultant medical oncologist, based on an assessment of the evidence, following a rapid evidence review. From the outset, a series of meetings took place between the PlanBe project team and the following professionals. The Complementary Therapies Manager, Rehabilitation and Physiotherapy Manager, Nutritionists based, Counsellors, Resilience coaches, Hypnotherapist and Head Chaplain. These advisors were consulted on the content of PlanBe modules or activities, based around key headings:
Description How does this work? What are the benefits? What is the evidence? Who would this be good for? Who should be careful? Myth busting Preparation and self-assessment Setting personal goals Resources and further reading
Content was developed between September 2015 and March 2016, but continued to be developed and added to during phase 1 of the PlanBe website. Page 14 of 39
Commissioning the website Due to the timescale and funding available for the project, the team decided with the agreement of The Christie, Macmillan and Manchester Cancer, to commission an external supplier for the development of the PlanBe website. A scoring method was devised following Christie procedure for tendering for small projects. The Project Team appointed local supplier Styles Defined to develop the website, who began work on PlanBe in December 2015. The different iterations of the website were presented to the PlanBe Focus Group and the Living with and Beyond Cancer Patient Reference Group. Due to feedback received, amendments were made (detailed below under ‘user involvement’) and the website (www.christieplanbe.com) was ready for launch by March 22nd 2016. Participants continued to feedback ‘snags’ to the Project Manager, and a final snagging list was produced and acted upon by early May 2016.
Figure 4: A screenshot of the PlanBe homepage
Developing and evaluation plan/data collection methods A logic model was produced for PlanBe (see Appendix 1) which outlines context, inputs, outputs, outcomes and longer term anticipated impact.
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An evaluation plan was produced which outlined the qualitative and quantitative methods available to the project to facilitate data collection and analysis: Qualitative: PlanBe focus group Living with and Beyond Cancer Patient Reference Group, based at The Christie Informal patient feedback via email or in person 1:1 telephone interviews with patients Social media interaction via twitter and project blog Quantitative: The website analytics of the PlanBe website were obtained. The number of PlanBe participants was 34. Surveymonkey results – surveys devised based on the Hospital Anxiety and Depression Score, the QLQ-C30 and in addition a number of PlanBe evaluation surveys (see appendix 4). A schedule of surveymonkeys and points at which they should be sent to the patient post-registration was devised.
User involvement A PlanBe Focus group was developed following recruitment of patients interested in the concept of PlanBe in the sarcoma clinic. The Focus Group met three times; November 2015, January 2016 and May 2016 (see Appendix 2 for feedback reports). The initial meeting included all the project team, six patients and one relative. The second meeting involved project team member, three patients and two partners. The third focus group included members of the project team; three patients and one partner (see Outcomes below and Appendix 2 for details). In addition, the existing Living with and Beyond Cancer Patient Reference Group at The Christie was regularly consulted on the development of the project. Informal feedback from patients was also collected in the sarcoma clinic and via email or social media. This feedback is provided in the Results section below. The involvement of patients in the development phase worked well. They made a very valuable contribution to the development of PlanBe. Their input was generally acted on. However, some of the comments they make, which were not acted on at the time, came up in later feedback. They require action, for example, focus group 1 agreed with the ‘commitment’ in principle but believed that it was too tightly structured and complex.
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Communications plan A PlanBe project blog was developed early in the project design process (accessible at www.christieplanbe.blogspot.co.uk). A number of posts were written by both the Consultant Medical Oncologist and Project Manager, with input and testimony from patients. Topics included diet and exercise, complementary therapies and the concept of holistic therapy or integrated oncology. A meeting took place with the Christie communications team to promote the blog posts internally and externally through their communication systems. In addition a series of podcasts were produced which were also promoted via the project blog. A PlanBe flyer was also produced, alongside a pull up banner.
Results Website analytics for the PlanBe platform Analysis of the PlanBe website between 1st April and 31st July identified that there were 333 sessions on the website. A session is a visit to an element of PlanBe. The analytics identify that 83% of sessions were new visits with 17% of people returning to the platform. A total of 525 pages were viewed, which was an average page per session of 1.58. The average time on a page was 2 minutes and 4 seconds. The home page received 55% of the views with an average time of 3 minutes and 25 seconds. Project blog The blogs had 3641 hits by 31st July 2016. The most popular blog post was Quackery.
Description of patient group All the patients recruited to PlanBe attended Dr Leahy’s Sarcoma Clinic. There were 52 patients recruited to PlanBe by 31st July. Of these, 32 were female and 20 were male. The vast majority of patients and therefore those recruited were predominantly white (96%). Additional demographic information provided by the 13 respondents to the About You questionnaire identified that 4 had a faith and 8 did not (1 person did not respond); 8 were heterosexual with 1 lesbian and 1 gay (3 people did not respond); 3 left school at 16 years of age and 10 went to university; prior to their cancer 4 were in full-time employment, 6 worked part-time and 3 were retired; after the cancer 3 were the main breadwinner for their family and 2 the main carer of children/others and 7 had responsibility solely for themselves.
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Table 4: Demographic information from About You questionnaire (n = 13) Faith
Yes = 4
No = 8
No response = 1
Sexual orientation
Lesbian = 1
Gay = 1
Heterosexual =8
Education
Up to age 16 yr. = 3
University = 10
Employment (pre-cancer)
Full-time = 4
Part-time = 6
Retired = 3
Role (post-cancer)
Main provider for others = 3
Main carer of others = 2
Responsibility for self = 6
No response = 3
No response = 2
A question was added to the About You questionnaire at the end of June to identify what people wanted to gain from their involvement with PlanBe. “To take control over my wellbeing” scored the highest; next was “To feel more positive about my physical health”; then “To be better informed; followed by “To have support from family/partner” and “To feel better”. The number of patients who agreed to register was 52. The number of patients actually registered online or in paper format were 34. This is an uptake of 65%. [See Discussion page 22] Of the patients registered, the number who created an active PlanBe schedule was 13 (11 women and 2 men). The most popular items added to the schedule were diet-related, physical activity and mind/spiritual (see Appendix 3 for details).
Evaluation Tools A number of evaluation tools were used to obtain information about the patient and their wellbeing; as well as to receive feedback on the usefulness of the PlanBe platform.
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Table 5: Questionnaire distribution and response rates No. of surveys distributed (minus bounce)
Number of responses
SurveyMonkey within a week of contact
19
13
PlanBe Quality of Life Questionnaire
SurveyMonkey within a week of contact
29
27
HADS (Hospital Anxiety and Depression scale)
SurveyMonkey within a week of contact
31
30
PlanBe Feedback 1: Accessibility
SurveyMonkey one week to one month
44
7
PlanBe Feedback 2: User Experience
SurveyMonkey one week to one month
39
7
Survey
Format
How Are You? Questionnaire
Distribution time
How are you? Questionnaire Responses Responses (n = 13) to the questionnaire How Are You identified that 92% were motivated to achieve their personal goals; 85% are able to enjoy the good things in their life and 67% feel informed about the positive steps they can take. However, many people had signs of negative emotional responses to their experience of having advanced cancer. Almost half (46%) did not feel in control of their situation; 38% were overwhelmed with worry and when asked to think about the future 31% felt they were living with no hope. 23% could not raise the interest or energy to get on with things.
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Table 6: How are you - Questionnaire Responses 1 92%
100% 80% 60% 40% 20% 0%
85%
77%
67%
Motivated Enjoy the Informed to achieve good things about personal in life positive goods steps to take
77%
69%
69%
62%
Informed Understood Can think Strong and Identified about what was clearly able to cope positive medical happening about with new aspects of condition situation stresses cancer
Table 7: How are you - Questionnaire Responses 2 50% 45% 40% 35% 30% 25% 20% 15% 10% 5% 0%
46%
38%
38% 31%
38% 31%
23%
31% 23%
8%
When considering their diagnosis, most respondents felt that they were well informed about their medical condition (77%) and understood what was happening to them (77%). 69% were able to think clearly about it and 69% felt mentally strong and able to cope with new stresses; 62% identified positive aspects about having cancer. However, 38% felt that their resilience was low; 38% feeling that their body has let them down; with 31% in shock and 31% feeling guilty. 23% were unable to consider what had happened to them and only 8% were able to accept the uncertainties about their medical condition and the future. (See Appendix 4: Survey monkey analysis for details). Page 20 of 39
PlanBe: Quality of Life Questionnaire Responses Twenty seven people responded to the Quality of Life questionnaire provided prior to engaging with PlanBe, one person completed it twice. The results are for all questionnaire responses as provided via survey monkey analysis. Their responses to the questions about their physical wellbeing identified that 71% had trouble with strenuous activities and 43% needed to stay in bed or a chair during the day. For many, other areas of their wellbeing were negatively affected on a physical, social and emotional level. 79% needed to rest; 78% were tired; 64% had trouble sleeping; over half (53%) had difficulty remembering things; 46% felt weak; and for 46% pain interfered with daily activities. 64% were limited in doing their work or daily activity; 61% social activities; and 56% hobbies/leisure activities. Their condition interfered with family life (57%) and caused financial difficulties (50%). The impact on emotional wellbeing was high. 71% worried; 57% felt tense, 52% irritable and 45% depressed. (See Appendix 4: Survey monkey analysis for details). Table 8: QoL Responses - The percentage of people who experienced difficulties in the previous week 90% 79% 78%
80% 72%
71%
70%
64%
60% 50%
64% 53%
43%
61%
59%
57%
57% 50%
46% 46%
52% 45%
40% 30% 20% 10% 0%
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Table 9: QoL Responses - The percentage of people experiencing "quiet a lot" or "very much" difficulty
80% 70% 70% 61% 60% 50% 40% 32% 29% 32% 26% 29% 30% 22% 18% 18% 18% 15% 14% 14% 20% 11% 8% 4% 10% 0%
Hospital Anxiety and Depression Scale (HADS) Questionnaire Responses Thirty participants completed the Hospital Anxiety and Depression Scale; one person completed it twice (58% of those who registered). Therefore the results are for 29 questionnaire responses as provided via survey monkey analysis. It supported the finding on the Quality of Life questionnaire that anxiety is high in this population. 97% could sit still at ease and feel relaxed. However, 83% felt tense or ‘wound up’ from time to time; 10% never did. 55% identified that “Worrying thoughts go through my mind” from time to time and for 17% this was a lot of the time. 66% “get a sort of frightened feeling as if something awful is about to happen” and 55% “get a sort of frightened feeling like ‘butterflies’ in the stomach”; with 59% who “get a sudden feeling of panic”. Analysis of the individual questionnaires identified that of the 29 responses 22 people were experiencing a “normal” level of anxiety (many at the higher end of “normal”), 14% a mild “case” of anxiety and 10% moderate anxiety.
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40% 34%
35%
30% 25%
21%
20%
17%
15% 10% 10% 5%
7% 3%
3%
0% Tense or Worry Frightened - Butterflies in "wound up" thoughts go awful think stomach through mind about to happen
Suddenly feeling a panic
Can sit at ease and feel relaxed
Restless
Table 10: HADS - Experience of anxiety - in "case" ranges
The results of the questions on depression identified that 45% “still enjoy the things I used to enjoy” and 45% not quite as much as they used to. 79% “can laugh and see the funny side of things” as much as they always could; with 21% unable to do so. 83%” feel cheerful” most of the time and 17% sometimes. 86% “can enjoy a good book or TV program” often and 14% sometimes. 55% “look forward with enjoyment to things” as much as they ever have done and 28% doing so rather less than usual. (See Appendix 4: Survey monkey analysis for details). Analysis of the individual questionnaires identified that of the 29 responses 22 people (76%) were not experiencing depression, 4 had mild symptoms and 1 was depressed.
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Table 11: HADS - Experience of depression - in "case" ranges 35% 31% 30%
28%
25% 20% 15% 10%
10%
10% 5%
3% 0%
0%
Don't feel cheerful
Don't enjoy book / TV
0% Don't enjoy Don’t laugh the things I and see funny used to do side
Don't look forward to enjoying things
Slowed down Lost interest in appearance
PlanBe Feedback 1 Questionnaire Responses on Accessing PlanBe Seven participants responded to the feedback request. All participants answered the questions about the different devices that PlanBe could be used on. However, the questionnaire did not identify the number or type of devices they had used to access PlanBe. The ease with which a participant could access the website varied depending on the type of device used. 71% agreed that “The website was easy to use on a PC or laptop”. 57% agreed that “The website was easy to use on a tablet (e.g. iPad)”. 43% agreed it was easy to use on a smart phone. 86% agreed that “The information provided by staff before I agreed to join PlanBe was clear”. All respondents agreed that “The process of registration was easy”. 86% agreed that “The website was welcoming and friendly”. 67% believed that “The video tutorial was helpful”. 86% agreed that “I understand the process of going through the preparation in the PlanBe school”. All agreed that “I understood the information provided in the PlanBe School”. (See Appendix 4: Survey monkey analysis for details).
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Table 12: Responses to Feedback 1 & 2 120% 100% 80% 60% 40% 20% 0%
PlanBe Feedback 2 Questionnaire Responses on Using PlanBe All seven participants agreed that “Browsing the topics in the PlanBe library was easy, and 86% felt that “The information contained within the PlanBe library was easy to understand”. 29% agreed that “The level of detail provided in each topic was too much”. 86% did not agree with the statement “I would prefer more detail in each topic”. 86% agreed that “I learned useful information that I did not know from using the PlanBe library”. Underdeveloped areas of the website, where content had not been uploaded, were commented on by a patient: ‘Would like to see the "under development" topics completed e.g. Resilience & Empowerment - Early Engagement & Fighting Spirit. Would have thought these would have been developed first. Also Your Cancer Treatment - Novel therapies, Clinical Trials, Unconventional Therapies. Given the nature of Sarcomas where Chemo / Radiotherapy does not offer high % chance of success, info on other areas is going to be of most interest to sarcoma sufferers. Under Diet, no information on "anti-cancer diets".’ 86% found the preparation step understandable. 71% of participants followed the suggestions in the preparation step to do a food and physical activity diary, which was an additional demand over a period of days. All participants found the commitment step understandable. (See Appendix 4: Survey monkey analysis for details). Page 25 of 39
PlanBe Telephone Feedback Comments via telephone interviews include:
“The website was easy to access”
“The information on the website was very helpful, particularly the library function”
“Had problems navigating through the stages of the PlanBe school”
“The school and pop ups were condescending. Programme, booklet and level pitched at patronising”
“It difficult to read because there was not enough contrast in colour”
“Unclear about keeping a diaries/notebook separate to the website”
“PlanBe has been a motivator and aided control”
“It has assisted the living with cancer rather than putting life on hold”
“PlanBe stepping stones were upsetting”
“PlanBe will not be for all. I am self-reliant, not a joiner and get support from friends”.
Early Focus Group Feedback 1 and 2 (See Appendix 2) The majority were already engaging in some of the activities that PlanBe advocates, for example, physical activity. They identified a broad spectrum of activities they believed may help (for example, crystals and reiki) and were aware that individuals could be led “down the wrong path”. Most of the group identified between 13 and 19 activities they would engage in. Two of the group explained they’d be happy to try any of the activities. The two carers involved in the group believed that they would also find the information useful and wanted to browse the website themselves. The group agreed with the ‘commitment’ in principle but believed that it was too complex. Interaction between the team and patients, motivational follow up texts, a space on the website for feedback and a support group were raised by participants. Specific comments were:
“It was easy to log the daily updates and use the information provided in each key area”
“Having all the relevant information in one place will be helpful”
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“Difficulty in moving from initial registering to PlanBe School and then from School to developing a plan”
“Need to tone down the language a little to be less instructive”
“Need to be able to assess what’s manageable, alongside what patients are already doing”
Focus Group feedback 3 (See Appendix 2) The Christie “Eating Well” booklet provides advice on increasing calorie intake, whereas the healthy eating section on PlanBe offers advice on maintaining healthy calorie intake confused a patient. The group felt they were given enough information at the outset to help them begin using PlanBe. The group discussed changes to the PlanBe leaflet and proposed the strapline “what you can do to help yourself”. The group believe that there should be a face to face element of the project.
“Use more colour and images”
“Problems navigating”
“More on coping/resilience”
“Clarify the purpose of the calendar and schedule function and provide somewhere to record thoughts and progress in free-text form”
“Sustainability”
“The stepping stones element was too wordy and shouldn’t need to complete each step in turn”
“Podcast too lengthy”
“More could be provided on your cancer therapies”
Living with and Beyond Cancer Steering Group The Living with and Beyond Cancer Steering Group met on 11th April 2016 and reviewed PlanBe Don’t like the ‘school’ Do like the library and other aspects of the site. Navigation needs to be a bit easier.
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Living with and Beyond Cancer Patient Reference Group The Living with and Beyond Cancer Patient Reference Group met on 1st March 2016. They were split into groups for the purpose of working through the site and creating a snagging list. The group developed the following list which was taken back to the developer: Add navigational tools to move back and forward throughout the PlanBe process On the mobile version in particular, the process of how to move through the PlanBe school etc. should be a lot clearer. Change endorsement/approval score to thumbs up or ‘like’ button. Consider changing this to gold/silver dependent on the score. The text is difficult to read (the diff shades of grey). Could we try black on yellow for example? We need a lot less text and more images/media. The language needs to be more consistent and less clinical. The user involvement in reviewing PlanBe provided consistent messages about the structure, content and presentation of PlanBe.
Impact of PlanBe For patients who engaged with PlanBe (scheduled activities, actions and/or used the library), it provided a comprehensive source of information. This enabled participants to access information on what they can do to help themselves and as a result feel more confident about the positive steps they can take.
Case Study The patient felt that overall, PlanBe has been very beneficial. “When I was first diagnosed, I felt that I was fighting to live, rather than living. I feel using PlanBe is helping me to live with cancer. I’ve started feeling normal again compared to how I used to feel.” The following are notes taken of a conversation with the patient in clinic on 14th of June 2016: PlanBe has helped the patient a lot. It has been a motivator and helped them to regain some control. They dealt with the frustration of other people doing things and making decisions for them without consultation, this is frustrating even if they are acting out of kindness and in the patient’s best interests. It has helped them to take more control, for example, of what they eat. It has assisted them in understanding themselves and those around them. It has helped with inclusion by feeling connected rather than isolated with their cancer. It also assisted understanding and empowered them to live with their cancer rather than waiting for the treatment and the outcomes of that treatment. They have learned to live while waiting. It has Page 28 of 39
The patient felt that overall, PlanBe has been very beneficial. “When I was first diagnosed, I felt that I was fighting to live, rather than living. I feel using PlanBe is helping me to live with cancer. I’ve started feeling normal again compared to how I used to feel.” The following are notes taken of a conversation with the patient in clinic on 14th of June 2016: PlanBe has helped the patient a lot. It has been a motivator and helped them to regain some control. They dealt with the frustration of other people doing things and making decisions for them without consultation, this is frustrating even if they are acting out of kindness and in the patient’s best interests. It has helped them to take more control, for example, of what they eat. It has assisted them in understanding themselves and those around them. It has helped with inclusion by feeling connected rather than isolated with their cancer. It also assisted understanding and empowered them to live with their cancer rather than waiting for the treatment and the outcomes of that treatment. They have learned to live while waiting. It has assisted them to see things differently, given them perspective and the ability to take a more positive view and to use when this slips away from them. It helps them to fight on. They have found the information on the website very helpful. Although the patient has explored what is offered to people with cancer beyond the hospital, PlanBe has assisted them in being more cautious of these offers. They have discussed them with medical staff when in clinic before deciding whether or not they will be useful. PlanBe has aided good decision making. They are interested in complementary therapies, such as massage and diets that are alkaline. They have identified someone who is offering this and a mushroom/fungal based supplement for a price. They are still interested in this but discussed it with medical staff and have not pursued this so far. The patient commented that people in remission have a different perspective to those newly diagnosed, who might be” more desperate” and need more than PlanBe can offer at that time. Through PlanBe the patient has learned that they have options and can take control of their life.
Communication between the clinical team and patients PlanBe has had an impact on communication between the clinical team and patients. There are more conversations about the self-help activities, and whether they are helpful or harmful, for example, “Can massage spread the cancer?” Ideally, patients would like greater interaction between them and the clinical team. This was raised in the focus groups, along with other suggestions including motivational follow up texts, a space on the website for feedback and reflections, and a support group. A face to face element was not a part of the scope of PlanBe. However, it was recognised that when patients were contacted in clinic or through telephone interviews they appreciated the interest in their welfare. Further work is required to investigate how a more interactive approach could be delivered. (e.g. push notifications) Page 29 of 39
Despite attempts to identify patients by putting labels on the files, the clinical team were not always aware that a person was on PlanBe. Some labels became detached or were removed by staff outside the department. Awareness could be raised by identifying in the clinical notes that the patient is on PlanBe. Most of the forms used in clinic focus on medical treatment. In order to draw more readily on an integrated approach to oncology, non-medical aspects of treatment should be conveniently recorded.
Impact on the clinical team Establishing referral to PlanBe required leadership and commitment to a holistic approach to cancer care from all the team. PlanBe was offered to those who were clinically assessed as able to benefit from the programme; therefore not all patients accessed the platform. However, the clinical team were observed beginning to take a more integrated approach to cancer care throughout the testing to all patients. PlanBe takes time to explain. In a hectic clinic, PlanBe is an additional demand. However, it was observed by the project manager that the availability of the tool increased the likelihood of a discussion between the clinical and the patient around general health and wellbeing. This represents the beginnings of a significant cultural shift within the clinical team.
Resources PlanBe is a means of supporting patient self-activated care with minimal impact on current service resources at the cancer centre. However, there are still resource implications for the provision of PlanBe. The website, blogs and podcasts will continue to need oversight, development and updating. PlanBe also required clinic time in identifying participants, seeking their agreement and registering then on the platform. There is a potential role for support staff to help patients in the use of PlanBe, and this could be explored in a future project. The library was reported as the most useful aspect of PlanBe and the part of the website that patients returned to). There is clearly a need for an online repository of Christie produced patient information.
Discussion Recruitment to PlanBe There is no doubt that there was an appetite for what PlanBe had to offer patients with advanced stage cancer. The majority of patients approached expressed an interest in taking part in PlanBe. The written information (generally provided in clinic) was well received and most people were happy to complete the registration form. They understood that they would receive a number of emails and questionnaires. It was identified that the questionnaires could be used for personal reflection, as well as providing the team with feedback. This was commented on “The questionnaires helped me Page 30 of 39
to be honest with myself”. This was also supported by the completion rate for the Quality of Life (28) and HADS (31) questionnaires.
Accessibility for all The website was easy to access on a PC or laptop (71%) but more difficult to access via a tablet (57%) or smart phone (43%). The booklet that was provided covered some of the content but did not include the detailed information that was in the online “library” and alternatives are therefore required for those who do not use the website. PlanBe was a useful online resource as most people had access to the internet. However, a small number of patients (3) did not have a computer or internet access, and one did not read very much either. A number of patients were not wholly at ease with using the internet. Others relied upon their partners to access the emails, questionnaires and PlanBe. With this in mind, all patients should be able to access PlanBe in a suitable format and clinical teams need to be prepared to provide additional support to ensure that no patient is excluded from this self-activation programme. Some patients would easily move through the PlanBe School, produce a schedule and become “PlanBe active”. However, many patients appeared to get stuck at step 1 - build your profile, or agreed to sign up and then not do so. The website was not welcoming and friendly for all. This was reflected in feedback from focus groups, in clinic and in telephone interviews, which contradicted that from the feedback questionnaire. From telephone interviews, the notion of a school and the need to progress through steps put some people off engaging with PlanBe. The “About You” questionnaire identified that 77% of respondents went to university. With this in mind a quick SMOG readability test (National Literacy Trust, www.literacytrust.org.uk) was done on the following 10 sentences: “You might think that it should be possible to work out in advance if a treatment will work by knowing how it works. Unfortunately, trying to predict like this is very difficult. Often things don’t work out as you expect. This is mainly because human biology is so complicated, and our understanding of it is still so incomplete. In the end, you have to actually try something and carefully observe what happens. This is what we do in clinical trials. When a trial is well designed, we can be sure that a particular treatment causes a known effect. Even if we don’t know how it works, at least we know that it does. In the PlanBe Library we will summarise published evidence of benefit where it exists. Unfortunately, clinical trials have not been done on every possible thing.” (from PlanBe Compass) This produced a readability score of over 12. Most people will understand a readability level under 10.The text did not require a very high level of readability, but appears to be too high to engage some of the individuals PlanBe is aimed at, and needs to be simplified slightly.
Information “Feedback 1” identified that the information provided on joining up for PlanBe was clear for most participants. Most (86%) found the preparation step understandable. All participants found the Page 31 of 39
commitment step understandable. The level of understanding of the information in the school was excellent. PlanBe has highlighted for patients the importance of general health and wellbeing in contributing to their cancer prognosis. The approval score was not always well received as some patients were engaging in CAMs that received a low rating and others wanted to make their own minds up on the usefulness of an activity. It was not the concept of the rating system but the ratings themselves that were sometimes objected to. However, it provided evidence-based assessments of the different therapies/approaches and assisted participants in their evaluation of the therapies on offer. It served a valuable function of enabling patients to review the evidence and subsequently the likely impact of engaging in the activity. It also assisted communication with the clinical team about their choices.
The extent to which the project fulfilled its aims The following section explores the extent to which the project fulfilled its aims of symptom control, anxiety reduction, improved quality of life, patient satisfaction and potential survival. Symptom control The symptoms most patients expressed a concern about were fatigue and weakness. Tiredness and the need to rest were experienced by 4 out of 5 patients, and 43% stayed in bed. Almost two thirds had trouble with strenuous activities and 46% felt weak. Their lack of strength (71%) and energy interfered with their daily life. On speaking to people in clinic or via telephone interviews, the tiredness experienced was generally linked to chemotherapy. Those registered on PlanBe who were dealing with the effects of chemotherapy and radiotherapy were reluctant to engage with it, their energies were focussed on dealing with the treatment (“I am concerned about getting through the chemotherapy”, “Not done anything with PlanBe due to radiotherapy treatment, not feeling well plus other issues”). Particularly when people were feeling unwell, PlanBe was sometimes regarded as a demand rather than a means of support. Three adjustments should be considered:
the timing of the introduction to PlanBe needs to take this into account.
links need to be made between different sections of the website, for example, physical activity and treatment, and how different activities can intersect to improve wellbeing.
the development of a means of starting with the expressed needs of patients, which takes into account what is happening in their treatment and their life, to ensure that PlanBe is regarded as a support rather than a demand.
Emotional health and wellbeing A greater emphasis on emotional health and wellbeing is fundamental to the future development of PlanBe. Anxiety was high in this population. Approximately, half of patients experienced signs of Page 32 of 39
anxiety and panic and a quarter were identified as “cases”. People experienced a great deal of worry (71%). The inability of 69% to accept the uncertainty about their condition and the future suggests that emotional wellbeing is a significant issue. However, this was one of the least developed domains in the PlanBe library. Almost a quarter of patients, who responded to telephone interviews, could not consider their diagnosis. For example, “The focus is on now and leading a ‘normal’ life, as well as the ability to take control. One size does not fit all, as people deal with a diagnosis of cancer differently”. The PlanBe stepping stones section of the website, which dealt with the 12 steps to a good death, was difficult reading for patients who use denial as a coping strategy. This section may need to highlight that it is for those people who are planning for the end of life. Taking Control 46% did not feel in control of their situation. The “About You” questionnaire identified that the main reason for engaging with PlanBe was “to take control of my wellbeing”. PlanBe is useful tool in helping people to take control when living with incurable disease in the short to medium term when quality of life is important. Many patients will engage with a wide variety of approaches to manage their disease. PlanBe helps them to do this in a more informed and constructive way by identifying the most useful strategies to take. Almost three quarters of the participants followed the suggestions in the preparation step to do a food diary and physical activity diary, and some continue to do so. This is an indication of an intention to take control and change behaviour patterns. Additionally, the case study (page 27) demonstrates it can empower them in dealing will other people’s responses to their cancer. How to manage the responses of others to the person’s cancer could be a component under an additional social/practical domain of the website may also be useful. The case study provided powerful evidence that PlanBe empowered some patients through identifying and addressing their own needs. This was also backed up by the telephone interviews with patients, some of whom had taken greater charge of life with cancer as a result of their involvement with PlanBe. This mostly focused on spending quality time with family and friends, change in diet, taking more exercise and engaging in positive activities, such as holidays and using CAMs. Prognosis PlanBe initiated self-activation in those who do not already engage in positive health practices and reinforced/extended these behaviours for those patients who do engage in positive health practices. This is likely to have an impact on the well-being of those who are PlanBe active. Additionally feedback via telephone interview from those on PlanBe, who were not active, identified that they were also engaging in more positive health practices than prior to contact about PlanBe, for example, attending a talk on healthy eating.
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Patient satisfaction (with service delivery) Patients expressed satisfaction with the service they received but it is difficult to evidence whether this has increased with their involvement in PlanBe.
Limitations The formality of the wording and tone put some patients off engaging with PlanBe. For example, focus group 1 identified the need to be less instructive. The PlanBe library provides information on the six domains of Body: Activity and Rest, Diet and Nutrition, Spirit/Mind, Resilience/Empowerment, Complementary therapies and Medical Treatments. It does not direct people as to how to use the content. Some areas of interest might require them to do follow up work, for example, find a local mindfulness session. The onus is on the patient to decide what is relevant for them to pursue. There is some potential for misinterpretation. The web analytics identified that over 4 in 5 users of the website were new to it and less than 1 in 5 returned to the website. To ensure the ongoing use of the website ways of encouraging regular use of PlanBe need to be explored, for example, extending the schedules on PlanBe to include a journal/diary element. Some research around website usage from other similar sites should be undertaken. The timeframe of one year for the development, implementation and evaluation of the project was short. It was an ambitious plan. This meant that aspects of the website were underdeveloped or needed refinement; and tasks like podcasts and blogs could not be prioritised throughout the whole project. The number of questionnaires and the original schedule for sending the questionnaires to participants meant five separate emails at one time with participants asked to respond to four of them. It was also difficult for the project manager to adhere to the schedule of sending feedback questionnaires 8, 15 and 29 days later and a second and third set of questionnaires every four weeks.
Unanticipated outcomes PlanBe increased communication with partners/family members as well as with the clinical team. One partner signed up with their own account and others were engaged with the patient in looking at PlanBe and how it could be used to assist the patient. Patients and relatives also reported that their involvement in PlanBe promoted greater communication about and understanding of cancer. The amount of clinic time taken up by PlanBe was more than anticipated. There was more take up of PlanBe by women (62%) than men (38%) and 11 women and 2 men were PlanBe active. How PlanBe can appeal more to men needs to be explored.
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Recommendations and Sustainability
Establish Project Board with a range of stakeholders, including patient representatives.
Continue user involvement in the development of PlanBe through focus groups and feedback.
Review the accessibility, accuracy and appropriateness of the clinical information presented in the Plan Be library.
Increase and improve the multi-media content available on the platform in order to reduce the amount of text and to improve accessibility. Explore user input in the social media element of PlanBe.
Explore how PlanBe can appeal more to men.
Follow up patients who repeatedly use PlanBe to identify their motivation for doing so and how this can be used to promote repeat visits in others.
Include an explanation of the structure of the website and how to navigate through it in the introductory video to improve accessibility.
Develop PlanBe to start from where the participant is in their experience with cancer. Further develop the emotional health and wellbeing will be central; as well as the social and practical concerns associated with a diagnosis of cancer. Develop a new social/practical domain.
Pilot the provision of staff support in engaging with PlanBe in the early stages.
Pilot the monitoring of patient use of PlanBe through clinic visit.
Explore the effectiveness of PlanBe in comparison with other similar websites/apps.
Explore the feasibility of integrating the questionnaires into the website and the possibility of using adaptive questionnaires, which follow the direction the responses take, and linking this with relevant information/support opportunities.
Incorporate into the website questions which flow from the questionnaires to assist participants to produce a holistic needs assessment and self-care plan.
Sustainability PlanBe is not specific to a single cancer type or to a geographic location. The approach, content, platform and tools are suitable for implementation widely within this Trust and could be rolled out to other Trusts. Page 35 of 39
References Seely, D.M., et al. (2012). A Systematic Review of Integrative Oncology Programs. Curr Oncol 19 (6): p.436-461 Denmark-WahneFried, W. et al (2015). The importance of expanding cancer treatment to include the promotion of overall long-term health. Cancer Journal for Clinicians, 65:3, pp. 167-189. Marchland, Lucille (2014). Integrative and complementary therapies for patients with advanced cancer. Ann Palliat Med 2014;3(3):160-171. Cancer Taskforce, Cancer Research UK (2015). Achieving World Class Cancer Outcomes: A Strategy for England 2015-2020. [Available Online] http://www.cancerresearchuk.org/about-us/cancertaskforce (accessed 25th April 2016) The Christie NHS Foundation Trust (2014). Strategic Plan Document for 2014-19. [Available online]. http://www.christie.nhs.uk/about-us/our-future/trust-strategy/ (accessed 25th April, 2016). National Cancer Survivorship Initiative: Vision (2010). Macmillan/Department of Health. {Available online] http://www.ncsi.org.uk/wp-content/uploads/NCSI-Vision-Document.pdf (accessed 23rd August 2016). National Cancer Vanguard (2016). Value Proposition January 2016. [Available online]. https://cancervanguardmanchesterdotorg.files.wordpress.com/2015/10/160208-final-nationalcancer-vanguard-value-proposition-february-submission-v21.pdf (accessed 27th April, 2016). Manchester Cancer (2015). Living with and Beyond Cancer Annual Report 2015. [Available online]. https://manchestercancer.org/find-out-more/pathway-boards/living-with-and-beyond-cancer/ (accessed 24th April 2016).
Acknowledgements We would like to thank all those involved in the project. Macmillan and Manchester Cancer for funding and supporting the project. Particular thanks go to the Sarcoma clinical team, website designer and the professionals who provided their expertise, for example, dietician, counsellor, complementary therapist, chaplain and mindfulness practitioner. The most important thank you goes to the patients who gave their time through the focus groups, PRG and as participants.
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Appendices and finances Appendix 1: Macmillan Logic Model: PlanBe Context/rationale
Inputs/activities
National research: patients with cancer may gain benefit from ‘integrative oncology’ or a holistic approach
PlanBe project team: development of PlanBe concepts, design, website, evaluation
National research: proximately 40% of patients use Complementary Therapies (CAM) - usually selfselected and often not disclosed to their doctor
LWBC Steering Group: steer and reference point for project
Local survey (Dr Leahy’s clinic): 57% of patients regular users of CAM and range of activities such as diet, exercise etc. Observations in clinic: patients feel there is an intimidating range of potential options in terms of therapies available/need or expectation for guidance from health professionals Limited resources within Christie to deliver onsite Need for encouragement of self-care
Website developer: development of website and CMS Christie colleagues (rehab, complementary therapies manager, hypnotherapist, counsellors etc.) Patients/User Involvement: LWBC Patient Reference Group/PlanBe Focus Group Manchester Cancer/Macmillan Innovation Fund (funding)
Outputs
PlanBe website and CMS (registration, profile building, PlanBe library of wellbeing activities, self-care plan builder) Trial with number of patients with lifelimiting advanced cancer within Dr Leahy’s Sarcoma Clinic Covers diet, exercise, mindfulness and selected complementary therapies Patient focus group events and feedback
Outcomes
Impact
(short to medium term)
(longer term)
Boost in wellbeing Reduction in anxiety levels Participants feel better able to cope with symptoms/emotional consequences of treatment Participants have better access to knowledge on what they can do to help themselves/feel informed about positive steps they can take
Patients empowered, more in control of their circumstances Patients derive therapeutic benefit of patient empowerment through selfmanagement Improved quality of life
Participants feel more in control/ feel better able to accept uncertainties about their condition/future Minimal impact on current service resources at the cancer centre
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Appendix 2: Focus group feedback reports Plan Be Focus Group PlanBe Patient Focus PlanBe Patient Focus 1 feedback.doc Group Feedback 18.1.16.doc Group Feedback 09.05.16.doc
Appendix 3: Activities added to schedule Items added to PlanBe schedules.doc
Appendix 4: Survey monkey analysis Data_All_About You.pdf
Data_All_How are you.pdf
Data_Feedback_2.p df
PlanBe Feedback.pptx
Data_All_QoL.pdf
Data_All_HADS.pdf Data_Feedback_1.p df
Appendix 5: Finances Expenditure_PlanBe. xlsx
PlanBe Staffing Costs.doc
Appendix 6: Leaflets and booklets PlanBe flyer.doc
Plan Be Booklet.docx
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