Service Evaluation of 'Living Well with the Impact of Cancer' Courses

The aim of the Penny Brohn Cancer Care Living Well Service Evaluation was to measure the level of benefit that participants were receiving from the Penny Brohn Cancer Care(PBCC)Living Well course and to inform current and future service provision at PBCC. The Penny Brohn Whole Person Approach model(PB-WPA model), which underpins the Living Well course, was designed to support the ‘whole person’ and the course was intended to meet the needs of people with cancer, as identified by the National Cancer Survivorship Initiative (NCSI). The combined qualitative and quantitative results of the Living Well Service Evaluation have demonstrated, very clearly at times, that participants were highly satisfied with the course. The immediate benefit of attending was measurable, in terms of improved health related quality of life (HRQoL) and improved MYCaW (Measure yourself Concerns and Wellbeing) concerns and wellbeing. The evaluation results show that the Living Well course experience enabled the majority of participants to regain control over many aspects of their life, and to start taking responsibility for their health. The following aspects of the course were identified as the most helpful: -Specific units of ‘education and explanation’ about cancer and why healthy lifestyle changes to areas such as diet, exercise and relaxation are beneficial -Advice and education from medical doctors -The opportunity to share experiences with other participants For some, this empowerment led to long-term changes in exercise, food consumption,use of self-help techniques and the ability to communicate more freely and openly with family, friends and medical professionals. These improvements were reflected in the 12 month outcome data, where a sustained improvement in HRQoL and MYCaW concerns was reported by many clients. Such patient reported outcome measures (PROMs) are limited in what they can measure, thus qualitative data were also collected to ensure that participants were able to share their experiences (positive or negative) of the Living Well course, and their subsequent experiences of applying the education and techniques learnt on the course. A picture emerged that identified difficulties in sustaining lifestyle changes at around the 3-6 month follow-up. Participants who returned to PBCC within the 12 month follow-up period, however, were more likely to benefit by reporting a greater improvement in HRQoL and MYCaW scores, plus an improved understanding of how to make and maintain healthy lifestyle changes to suit their individual circumstances. In regards to the current NCSI priorities, it is hoped that the data reported in this evaluation go some way to informing the following: -Information and support from the point of diagnosis -Managing the consequences of treatment -Promoting recovery -Sustaining recovery -Supporting people with active and advanced disease -Improving survivorship intelligence Finally, this report demonstrates how a patient-centred model of support can be effectively evaluated to provide relevant, practical and evidence-based information to commissioners. Participant satisfaction: Participants were very satisfied with the course content, course delivery and resources provided which often exceeded their needs and expectations. Participant outcomes: The PB-WPA model successfully encompassed and supported all the types of concerns participants arrived with. The most frequently reported participant concerns were psychological and emotional,about their wellbeing and about their physical health. On average, participants experienced statistically and clinically significant improvements in their MYCaW concern and wellbeing scores, and total HRQoL scores,which remained improved over the 12 month follow-up. The aspects of HRQoL that were most likely to improve after attending the Living Well course were spiritual, emotional and functional wellbeing. Supporters had their own profile of concerns, namely psychological and emotional,supporter specific concerns and practical concerns. Concerns were as severely rated as those from participants with a diagnosis of cancer and also showed statistically significant average improvements throughout the 12 month follow-up. The small group of participants with metastatic disease reported significant improvements in their MYCaW concern scores, in line with the whole evaluation group,and a significantly greater improvement in HRQoL over 12 months compared to participants with primary cancer.Participants who returned for more support from PBCC were in more need of support than those who did not return. They were more likely to have poorer HRQoL at baseline and rate their concerns more severely. Participants who returned to PBCC experienced more improvement in HRQoL that was likely to be clinically significant. These participants also had a greater degree of improvement in their MYCaW concerns, compared to non-returners. Over half of the participants experienced new concerns over the 12 month follow-up period. Concerns were most frequently associated with psychological and emotional and physical issues. Furthermore, at 12 months, participants were still experiencing arange of health issues

Integrative Whole Person Oncology Care in the UK

The term ‘whole person cancer care’ - an approach that addresses the needs of the person as well as treating the disease - is more widely understood in the UK than its synonym ‘integrative oncology”. The National Health Service (NHS), provides free access to care for all, which makes it harder to prioritise NHS funding of whole person medicine, where interventions may be multi-modal and lacking in cost-effectiveness data. Despite this, around 30% of cancer patients are known to use some form of complementary or alternative medicine (CAM). This is virtually never medically led, and usually without the support or even the knowledge of their oncology teams, with the exception of one or two large cancer centres. UK oncology services are, however, starting to be influenced from three sides; firstly, by well-developed and more holistic palliative care services; secondly, by directives from central government via the sustainable healthcare agenda; and thirdly, by increasing pressure from patient-led groups and cancer charities. CAM remains unlikely to be provided through the NHS, but nutrition, physical activity, mindfulness, and stress management are already becoming a core part of the NHS ‘Living With and Beyond Cancer’ agenda. This supports cancer survivors into stratified pathways of care, based on individual, self-reported holistic needs and risk assessments, which are shared between healthcare professionals and patients. Health and Wellbeing events are being built into cancer care pathways, designed to activate patients into self-management and support positive lifestyle change. Those with greater needs can be directed towards appropriate external providers, where many examples of innovative practice exist. These changes in policy and vision for the NHS present an opportunity for Integrative Oncology to develop further and to reach populations who would, in many other countries, remain underserved or hard-to-reach by whole person approaches

The Responsiveness, Content Validity, and Convergent Validity of the Measure Yourself Concerns and Wellbeing (MYCaW) Patient-Reported Outcome Measure

Objective Measure Yourself Concerns and Wellbeing (MYCaW) is a patient-centred questionnaire that allows cancer patients to identify and quantify the severity of their ‘Concerns’ and Wellbeing, as opposed to using a pre-determined list. MYCaW administration is brief and aids in prioritising treatment approaches. Our goal was to assess the convergent validity and responsiveness of MYCaW scores over time, the generalisability of the existing qualitative coding framework in different complementary and integrative healthcare settings and content validity. Methods Baseline and 6-week follow-up data (n=82) from MYCaW and FACIT-SpEx questionnaires were collected for a service evaluation of the ‘Living Well With The Impact of Cancer’ course at Penny Brohn Cancer Care. MYCaW construct validity was determined using Spearman's Rank Correlation test, and responsiveness indices assessed score changes over time. The existing qualitative coding framework was reviewed using a new dataset (n=158) and coverage of concern categories compared to items of existing outcome measures. Results Good correlation between MYCaW and FACIT-SpEx score changes were achieved (r= -0.57, p≥0.01). MYCaW Profile and Concern scores were highly responsive to change: SRM=1.02 and 1.08; effect size=1.26 and 1.22. MYCaW change scores showed the anticipated gradient of change according to clinically relevant degrees of change. Categories including ‘Spirituality’, ‘weight change’ and ‘practical concerns’ were added to the coding framework to improve generalisability. Conclusions MYCaW scores were highly responsive to change, allowing personalized patient outcomes to be quantified; the qualitative coding framework is generalisable across different oncology settings and has broader coverage of patient-identified concerns compared with existing cancer-related patient-reported outcome measures

Using a whole person approach to support people with cancer: a longitudinal, mixed methods service evaluation

Introduction: Improved models of care are needed to meet all the support needs of people with cancer, which encompass psychological, emotional, physical, spiritual, sexual, occupational, social and existential needs. The aim of this paper is to (1) evaluate short and long-term impacts of using a whole person approach to support people with cancer on the Living Well with the Impact of Cancer Course (LWC); (2) use these data to inform strategic decisions about future service provision at Penny Brohn UK. Methods: Longitudinal mixed-methods service evaluation (n=135). Data collected included health related quality of life (HRQoL) (FACIT-SpEx); Concerns (types and severity - MYCaW); lifestyle behaviour (bespoke questionnaire) and participants’ experiences over 12 months post course. Results: Statistically and clinically significant improvements from baseline - 12 months in severity of MYCaW Concerns (n=64; p<0.000) and mean total HRQoL (n=66; p<0.000). The majority of MYCaW concerns were ‘psychological and emotional’ and about participants’ wellbeing. Spiritual, emotional and functional wellbeing contributed most to HRQoL improvements at 12 months. Barriers to maintaining healthy lifestyle changes included lack of support from family and friends, time constraints, and returning to work. 3-6 months post-course was identified as the time when more support was most likely to be needed. Conclusions: Using a whole person approach for the LWC enabled the needs of participants to be met, and statistically and clinically significant improvements in HRQoL and MYCaW Concerns were reported. Qualitative data analysis explored how experiencing whole person support enabled participants to make and sustain healthy lifestyle changes associated with improved survivorship. Barriers experienced to making health behaviour change were also identified. These data then informed wider and more person-centred clinical provision to increase the maintenance of positive long-term behaviour changes. Comparison of whole person approaches to cancer treatment and support and standard care are now urgently needed

Building the economic evidence case for social prescribing

Understanding the economic impact of social prescribing remains an urgent priority for the National Academy of Social Prescribing (NASP). As yet it is unclear how much data exists within the different systems to enable economic analyses of the impact of social prescribing schemes to be conducted. The complexity in understanding the economic impact of social prescribing—and indeed all non-clinical community-based approaches to health—is compounded by the multisector nature of social prescribing. Furthermore, a variety of approaches are being used to test similar but different understandings of both cost and value, including social value, cost, benefit and economic value. There are a growing range of reports and peer-reviewed publications that focus on the impact of social prescribing on health and social care demand, some of which have economic analyses and some which remain as potential data sets for economic analyses. At least one third of all outcomes (if not more) are directly related to the social determinants of health1,2 (SDH) which are not taken into account with economic analysis focused only on health service usage. This range of outcomes experienced by service users2-4 is driving many researchers to conduct economic analyses that attempt to assign value to outcomes beyond the health sector, for instance using social return on investment (SROI) and proxy values. Other researchers have discussed the evolution in economic analyses at length and suggest additional components to existing methodologies, e.g., multi criteria decision analysis (MCDA) to account for additional complexity of social prescribing5. Further developments are also being trialled such as the Wellbeing-adjusted Life Years (WELLBY) to understand the economic value attached to wellbeing6, as opposed to the Quality Adjusted Life Years (QALY), which reports the economic value of quality of life. We are entering an era of providing personalised support to people in integrated and multidisciplinary systems with different local population needs. As such, there is a need to evolve the approaches to determining cost and value of social prescribing, and to reach agreements on methodologies that all sectors are willing to accept as sound approaches. Furthermore, as discussed by McDaid and colleagues in 2019 7, there is a need to move beyond the immediate benefits of social prescribing and to explore the longer-term benefits of sustained engagement in non-clinical activities and provision of support to address issues linked to the SDH. This would enable more data to inform the preventative role and economic impact that social prescribing may have, which is currently an evidence gap. This rapid scoping review was commissioned by NASP and additional roundtables were supported by the National Centre for Creative Health and UKRI/AHRC’s ‘Mobilising Community Assets to Tackle Health Inequalities’ research programme (led by University College London). It aims to provide an update to the first economic evidence review from NASP and explore economic data and health and social care usage data in more detail. This rapid scoping review aims to ascertain: What the current literature indicates in terms of cost or value of social prescribing schemes or parts of the social prescribing scheme. If there are potential data sets that report the impact of social prescribing on health service usage that could have economic analysis applied to them. Stakeholder opinions on the methodological approaches for creating the current economic evaluation evidence base for social prescribing and potential future developments that are needed. How these findings can inform a larger programme of research that is needed to establish the economic impact and value of social prescribing across all relevant sectors in the community. As this report contains three separate elements to it, each element will be reported with methods and results, and then key themes will be brought together with recommendations

Impact of Penny Brohn UK’s Living Well course on informal caregivers of people with cancer

Objectives: This study evaluated the change in the concerns, wellbeing and lifestyle behaviours of informal caregivers of people with cancer attending Penny Brohn UK’s Living Well Course (LWC), a self-management education intervention. Design: A pre-post-course design collected self-reported quantitative and qualitative data from informal caregivers attending a LWC. Setting/Location: Penny Brohn UK is a UK based charity (not-for-profit) providing specialist integrative, whole person support, free of charge, to people affected by cancer. Subjects: Informal caregivers taking part in a Penny Brohn UK LWC between June 2014 and May 2016 attending alongside the person with cancer. Intervention: The LWC is a structured 15 hour, multi-modal group self-management educational course, designed to help people affected by cancer learn tools and techniques to help build resilience. Trained facilitators deliver LWCs to around 12 people with various types and stages of cancer, and their informal caregivers. Outcome measures: MYCaW (Measure Yourself Concern and Wellbeing) completed pre-course and at 6 weeks post-course; and bespoke 6 week follow up Patient Reported Experience Measure (PREM). Results: 480 informal caregivers attended a LWC June 2014 to May 2016. 118 completed a 6 week follow up MYCaW: MYCaW Concerns 1 and 2 showed statistically significant improvements (p<.0001), there was no significant improvement in wellbeing. Informal caregivers’ most reported concerns relating to themselves were psychological and emotional issues (59%). The primary concern of the caregiver for the care recipient was related to the physical health of the person with cancer (40%). 87% of responding informal caregivers stated the LWC enabled health self-management. Conclusions: The LWC was followed by an improvement in informal caregivers’ concerns, and increased self-management of their own health needs. More studies, with larger sample size, are needed to explore if better self-management by informal caregivers may also lead to improvements in patients’ health and wellbeing

Health and Society: reflections on policy

SUMMARY Improvements in health among the populations of developed countries have come about largely through improved living standards and public health measures, and the contribution of medicine has been relatively small. In addition, many medical techniques of the present have not yet been evaluated. A health policy giving due weight to broad social measures is applicable to both developed and underdeveloped countries, but this may involve change in underlying socioeconomic structures and so encounter political obstacles. RESUMEN Salud y sociedad: reflexiones sobre pol&amp;#x006b;?tica Los progresos en salud registrados en los países desarrollados, derivan principalmente de mejoramientos en los niveles de vida y de medidas de salud pública, siendo relativamente pequeña la contribución de la medicina. Por otra parte, muchas de las técnicas médicas actuales no han sido evaluadas hasta ahora. Una política de salud que otorgue el debido peso a amplias medidas sociales, es aplicable tanto a los países desarrollados como a los subdesarrollados. No obstante, esto puede involucrar cambios en las estructuras socioeconómicas subyacentes y, en concecuencia, encontrar obstáculos políticos. RESUMES Santé et société: réflections sur le système L'amélioration de la santé chez les populations des pays développés se doit, en grande partie, à un meilleur niveau de vie et aux mesures plus appropriées introduites par la santé publique, la médecine même n'y ayant joué qu'un rôle relativement minime. De plus, beaucoup de techniques médicales actuelles n'ont pas été adéquatement évaluées. Un programme de santé qui prend en juste considération l'ensemble des intérêts sociaux, serait applicable aussi bien pour les pays développés que sous?développés, mais ceci peut entraîner un changement fondamental des structures socio?économiques et rencontrer par conséquent des obstacles politiques

Development of Measure Yourself Concerns and Wellbeing for informal caregivers of people with cancer – a multicentred study

Purpose: Measure Yourself Concerns and Wellbeing (MYCaW) is a validated person-centred measure of the concerns and wellbeing of people affected by cancer. Research suggests that the concerns of informal caregivers (ICs) are as complex and severely rated as people with cancer, yet MYCaW has only been used to represent cancer patients’ concerns and wellbeing. This paper reports on the development of a new qualitative coding framework for MYCaW to capture the concerns of ICs, to better understand the needs of this group. Methods: This multicentred study involved collection of data from ICs receiving support from two UK cancer support charities (Penny Brohn UK and Cavendish Cancer Care). Qualitative codes were developed through a detailed thematic analysis of ICs’ stated concerns. Results: Thematic analysis of IC questionnaire data identified key themes which were translated into a coding framework with two overarching sections; 1. ‘informal caregiver concerns for self’ and 2. ‘informal caregiver concerns for the person with cancer’. Supercategories with specific accompanying codes were developed for each section. Two further rounds of framework testing across different cohorts allowed for iterative development and refinement of the framework content. Conclusions: This is the first person-centred tool specifically designed for capturing IC’s concerns through their own words. This coding framework will allow for IC data to be analysed using a rigorous and reproducible method, and therefore reported in a standardised way. This may also be of interest to those exploring the needs of ICs of people in other situations