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.

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 behaviors of informal caregivers of people with cancer attending Penny Brohn UK's Living Well Course (LWC), a self-management education intervention. DESIGN: A pre-postcourse design collected self-reported quantitative and qualitative data from informal caregivers attending a LWC. SETTING/LOCATION: Penny Brohn UK is a United Kingdom-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 h, multimodal 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: Measure Yourself Concern and Wellbeing (MYCaW) completed precourse and at 6 weeks postcourse; and bespoke 6-week follow-up Patient Reported Experience Measure. RESULTS: Four hundred eighty informal caregivers attended a LWC June 2014 to May 2016. One hundred eighteen completed a 6-week follow-up MYCaW: MYCaW Concerns 1 and 2 showed statistically significant improvements (p < 0.0001), 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%). Eighty-seven percent of responding informal caregivers stated that 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.

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 United Kingdom than its synonym "integrative oncology." The National Health Service (NHS) provides free access to care for all, which makes it harder to prioritize NHS funding of whole-person medicine, where interventions may be multimodal 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 centers. UK oncology services are, however, starting to be influenced from three sides; first, by well-developed and more holistic palliative care services; second, by directives from central government via the sustainable health care agenda; and third, 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 health care professionals and patients. Health and well-being 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 toward 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.

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 article is to (a) 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) and (b) 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 behavior (bespoke questionnaire), and participants' experiences over 12 months postcourse. Results Statistically and clinically significant improvements from baseline to 12 months in severity of MYCaW Concerns (n = 64; P < .000) and mean total HRQoL (n = 66; P < .000). The majority of MYCaW concerns were "psychological and emotional" and about participants' well-being. Spiritual, emotional, and functional well-being 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. Three to 6 months postcourse 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 behavior change were also identified. These data then informed wider and more person-centered clinical provision to increase the maintenance of positive long-term behavior changes. Comparison of whole person approaches to cancer treatment and support and standard care are now urgently needed.

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-centered questionnaire that allows cancer patients to identify and quantify the severity of their "concerns" and "wellbeing," as opposed to using a predetermined list. MYCaW administration is brief and aids in prioritizing treatment approaches. Our goal was to assess the convergent validity and responsiveness of MYCaW scores over time, the generalizability of the existing qualitative coding framework in different complementary and integrative oncology 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 Cance Care. MYCaW convergent 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 data set (n = 158) and coverage of concern categories compared with items of existing outcome measures. RESULTS: Good correlation between MYCaW and FACIT-SpEx score changes were achieved (r = -0.57, P ≥ .01). MYCaW Profile and Concern scores were highly responsive to change: standardized response mean = 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 generalizability. CONCLUSIONS: MYCaW scores were highly responsive to change, allowing personalized patient outcomes to be quantified; the qualitative coding framework appears generalizable across different integrative oncology settings and has broader coverage of patient-identified concerns compared with existing cancer-related patient-reported outcome measures.