Developing a framework of concerns from people living with frailty, for the Measure Yourself Concerns and Wellbeing (MYCaW) person-centred outcome measure.

INTRODUCTION: Measure Yourself Concerns and Wellbeing is a validated person-centred outcome measure, piloted as a core monitoring tool to understand what matters to people living with frailty in Gloucestershire. This paper describes the acceptability of MYCaW used in this setting, and the development of a framework for analysing personalised concerns from people living with frailty. METHODS: MYCaW was implemented in the Complex Care at Home service and South Cotswold Frailty Service from November 2020 onwards. MYCaW was completed at the person's first meeting with a community matron and then 3 months later. Nineteen staff completed an anonymous survey to provide feedback on the acceptability of the tool. A framework of concerns bespoke to people living with frailty was created via iterative rounds of independent coding of 989 concerns from 526 people. The inter-rater reliability of the framework was determined by using the Cronbach alpha test. RESULTS: MYCaW was simple to use and helped health professionals' discussions to be patient focused. A pictorial scale accompanying the Numerical Rating Scale was developed and tested to help people engage with scoring their concerns and well-being more easily. A framework of concerns from people living with frailty was produced with five main supercategories: Mental and Emotional Concerns; Physical Concerns; Healthcare and Service Provision Concerns, Concerns with General Health and Well-being and Practical Concerns. Inter-rater reliability was kappa=0.905. CONCLUSIONS: MYCaW was acceptable as a core monitoring tool for people living with frailty and enabled a systematic approach to opening 'What Matters to Me' conversations. The personalised data generated valuable insights into how the frailty services positively impacted the outcomes for people living with frailty. The coding framework demonstrated a wide range of concerns-many linked to inequalities and not identified on existing outcome measures recommended for people living with frailty.

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.

Individualised and complex experiences of integrative cancer support care: combining qualitative and quantitative data.

OBJECTIVES: The widespread use of complementary therapies alongside biomedical treatment by people with cancer is not supported by evidence from clinical trials. We aimed to use combined qualitative and quantitative data to describe and measure individualised experiences and outcomes. MATERIALS AND METHODS: In three integrative cancer support centres (two breast cancer only) in the UK, consecutive patients completed the individualised outcome questionnaire Measure Yourself Concerns and Wellbeing (MYCaW) before and after treatment. MYCaW collects quantitative data (seven-point scales) and written qualitative data and the qualitative data were analysed using published categories. RESULTS: Seven hundred eighty-two participants, 92% female, mean age 51 years, nominated a wide range of concerns. Psychological and emotional concerns predominated. At follow-up, the mean change (improvement) in scores (n = 588) were: concern 1, 2.06 (95% CI 1.92-2.20); concern 2, 1.74 (95% CI 1.60-1.90); and well-being, 0.64 (95% CI 0.52-0.75). The most common responses to 'what has been the most important aspect for you?' were 'receiving complementary therapies on an individual or group basis' (26.2%); 'support and understanding received from therapists' (17.1%) and 'time spent with other patients at the centres' (16.1%). Positive (61.5%) and negative (38.5%) descriptions of 'other things affecting your health' correlated with larger and smaller improvement in concerns and well-being, respectively. CONCLUSIONS: In a multicentre evaluation, the MYCaW questionnaire provides rich data about patient experience, changes over time and perceptions of what was important to each individual with cancer within that experience. It is unlikely that meaningful evaluations of this complex intervention could be carried out by quantitative methods alone.

How to summarise and report written qualitative data from patients: a method for use in cancer support care.

GOALS OF WORK: The goal of this study is the determination of key themes to aid the analysis of qualitative data collected at three cancer support centres in England, using the Measure Yourself Concerns and Wellbeing (MYCaW) questionnaire. PATIENTS AND METHODS: People with cancer who use complementary therapies experience and value a wide range of treatment effects, yet tools are urgently required to quantitatively measure these outcomes. MYCaW is an individualised questionnaire used in cancer support centres providing complementary therapies, scoring 'concerns or problems' and 'well-being' and collecting qualitative data about other major events in a patient's life and what has been most important to the patient. Content analysis on 782 MYCaW questionnaires from people at these cancer support centres was carried out. The 'concerns,' 'other things going on in their life' and 'important aspects of centre' were thematically categorised and externally validated by a focus group, and the inter-rater reliability was calculated. MAIN RESULTS: Clinical information from a cancer patient's perspective was collected that is not measured on standard quality-of-life questionnaires; furthermore, some themes acknowledge the multi-faceted aspects of complementary and alternative medicine provision, rather than information only relating to the therapeutic intervention. Categories for qualitative MYCaW analysis have been established providing a tool for future research and/or service delivery improvement within cancer support centres such as these. CONCLUSIONS: The established themes provide a framework to aid analysis of qualitative aspects of complementary therapy care for people with cancer, improving our understanding of how the patient's cancer experience can be aided by complementary therapies in specialised cancer centres.

Effects of caffeine and caffeine withdrawal on mood and cognitive performance degraded by sleep restriction.

RATIONALE: It has been suggested that caffeine is most likely to benefit mood and performance when alertness is low. OBJECTIVES: To measure the effects of caffeine on psychomotor and cognitive performance, mood, blood pressure and heart rate in sleep-restricted participants. To do this in a group of participants who had also been previously deprived of caffeine for 3 weeks, thereby potentially removing the confounding effects of acute caffeine withdrawal. METHODS: Participants were moderate to moderate-high caffeine consumers who were provided with either decaffeinated tea and/or coffee for 3 weeks (LTW) or regular tea and/or coffee for 3 weeks (overnight caffeine-withdrawn participants, ONW). Then, following overnight caffeine abstinence, they were tested on a battery of tasks assessing mood, cognitive performance, etc. before and after receiving caffeine (1.2 mg/kg) or on another day after receiving placebo. RESULTS: Final analyses were based on 17 long-term caffeine-withdrawn participants (LTW) and 17 ONW participants whose salivary caffeine levels on each test day confirmed probable compliance with the instructions concerning restrictions on consumption of caffeine-containing drinks. Acute caffeine withdrawal (ONW) had a number of negative effects, including impairment of cognitive performance, increased headache, and reduced alertness and clear-headedness. Caffeine (versus placebo) did not significantly improve cognitive performance in LTW participants, although it prevented further deterioration of performance in ONW participants. Caffeine increased tapping speed (but tended to impair hand steadiness), increased blood pressure, and had some effects on mood in both groups. CONCLUSIONS: The findings provide strong support for the withdrawal reversal hypothesis. In particular, cognitive performance was found to be affected adversely by acute caffeine withdrawal and, even in the context of alertness lowered by sleep restriction, cognitive performance was not improved by caffeine in the absence of these withdrawal effects. Different patterns of effects (or lack of effects) of caffeine and caffeine withdrawal were found for other variables, but overall these results also suggest that there is little benefit to be gained from caffeine consumption.

Cognitive and psychomotor performance, mood, and pressor effects of caffeine after 4, 6 and 8 h caffeine abstinence.

RATIONALE: Many studies have found that caffeine consumed after overnight caffeine abstinence improves cognitive performance and mood. Much less is known, however, about the effects of caffeine after shorter periods of caffeine abstinence. OBJECTIVES: The aim of this study was to measure the effects on psychomotor and cognitive performance, mood, hand steadiness, blood pressure and heart rate of caffeine administration after periods of 4, 6, and 8 h of caffeine abstinence. METHODS: Participants (n = 49, 27 female) were moderate to moderate-high caffeine consumers (mean daily intake 370 mg/day). Following overnight caffeine abstinence, a 'pre-dose' of caffeine (1.2 mg/kg) was administered at 9 A.M, 11 A.M or 1 P.M. The participants started a baseline battery of measurements at 4 P.M.: before receiving caffeine (1.2 mg/kg) or placebo at 5 P.M.: They then performed the battery of tests again, starting at 5:30 P.M. This was a double-blind, placebo-controlled, randomised study. RESULTS: Performance and mood measurements confirmed a psychostimulant action of caffeine (versus placebo), but only after 8 h of caffeine abstinence. Caffeine also increased blood pressure after 8-h abstinence, whereas hand steadiness was decreased and perception of task demand was increased by caffeine after 4 h, but not after 6- and 8-h abstinence. CONCLUSIONS: A second cup-of-coffee equivalent dose of caffeine only reliably affected cognitive performance and mood after an 8-h interval between doses, but not after shorter intervals (when caffeine had some adverse effects). These results show that, apart from caffeine consumption soon after waking, the daily pattern of caffeine intake of many typical caffeine consumers is not well explained by the short-term psychostimulant effects of caffeine.