Are We All Agreed? Consensual Methods and the "Necessities of Life" in the UK Today

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Development of a supportive care measure for economic evaluation of end-of-life care using qualitative methods

Background: An imperative to assess the economic impact of care at the end of life is emerging in response to national policy developments in a number of settings. Current focus on health benefits in economic evaluation may not appropriately capture benefits of interventions at the end of life. No instruments are available for measuring such benefits for economic evaluation of end-of-life care. Aim: To develop a descriptive system for a measure for use in economic evaluation of end-of-life care. Design: An initial phase of in-depth interviews was conducted to develop conceptual attributes for inclusion in a measure; a second phase of semi-structured repeat interviews with a subsample of informants was carried out to clarify and confirm the final set of attributes and to develop meaningful wording for a measure. Setting/participants: In total, 23 older people from three groups across the dying trajectory: older people (1) within the general population, (2) living in residential care and (3) receiving palliative care. Results: Interviews suggested that the important domains to include within this framework from the perspective of those approaching the end-of-life are choice/having a say in decision-making, love and affection/being with people who care, freedom from physical suffering, freedom from emotional suffering, dignity and self-respect, support, and preparation. A full descriptive system comprising seven questions, each representing one attribute, was developed. Conclusion: Economic evaluation should reflect the broader benefits of end-of-life care. Although the supportive care measure developed here requires validation and valuation, it provides a substantial step forward in appropriate economic evaluation of end-of-life care. </jats:sec

The provision of dietary and physical activity advice for men diagnosed with prostate cancer:a qualitative study of the experiences and views of health care professionals, patients and partners

PURPOSE: To explore the views and experiences of health care professionals (HCPs), men diagnosed with localised prostate cancer and their partners about the provision of advice on diet and physical activity after diagnosis and treatment for localised prostate cancer. METHODS: Semi-structured in-depth interviews with ten HCPs (Consultant Urological Surgeons, Uro-Oncology Clinical Nurse Specialists and Allied Health Professionals: see Table 1) and sixteen men diagnosed with localised prostate cancer and seven of their partners. Data from interviews were thematically analysed using the Framework Approach. RESULTS: The men and their partners provided differing accounts to the HCPs and sometimes to each other concerning the provision of advice on diet and physical activity. Some men were unable to recall receiving such advice from HCPs. Factors impacting upon advice-giving included the perceived lack of an evidence base to support dietary and physical activity advice and the credibility of advice providers. The timing of advice provision was a contentious issue as some HCPs believed that patients might not be willing to receive dietary and physical activity advice at the time of diagnosis, whilst others viewed this an opportune time to provide behaviour change information. Patients concurred with the latter opinion. CONCLUSIONS: Men and their partners would value nutritional and physical activity advice from their HCP, after a localised prostate cancer diagnosis. Men would prefer to receive this advice at an early stage in their cancer journey and may implement behaviour change if the received advice is clear and evidence-based. HCPs should receive suitable training regarding what information to provide to men and how best to deliver this information

How parents and children evaluate emollients for childhood eczema: a qualitative study

BACKGROUND: Eczema affects one in five children in the UK. Regular application of emollients is routinely recommended for children with eczema. There are four main emollient types, but no clear evidence of which is best. The current ‘trial and error’ approach to find suitable emollients can be frustrating for parents, children, and clinicians. AIM: To identify how parents and children experience and evaluate emollients. DESIGN AND SETTING: Qualitative interview study, nested within a primary care trial of emollients (Best Emollients for Eczema [BEE] trial). METHOD: Semi-structured interviews with children with eczema and their parents were conducted. Participants were purposively sampled on emollient type (lotion, cream, gel, or ointment), age, and eczema severity. RESULTS: Forty-four parents were interviewed, with children participating in 24 of those interviews. There was no clear preference for any one emollient type. The strongest theme was the variation of experience in each of the four types. Participants focused on thickness and absorbency, both positively and negatively, to frame their evaluations. Effectiveness and acceptability were both considered when evaluating an emollient but effectiveness was the primary driver for continued use. For some, participating in the trial had changed their knowledge and behaviour of emollients, resulting in use that was more regular and for a longer duration. CONCLUSION: There is no one emollient that is suitable for everyone, and parents/children prioritise different aspects of emollients. Future research could evaluate decision aids and/or tester pots of different types, which could enable clinicians and parents/children to work collaboratively to identify the best emollient for them

Barriers and facilitators to healthy lifestyle and acceptability of a dietary and physical activity intervention among African Caribbean prostate cancer survivors in the UK: a qualitative study.

OBJECTIVES: Diet and lifestyle may have a role in delaying prostate cancer progression, but little is known about the health behaviours of Black British prostate cancer survivors despite this group having a higher prostate cancer mortality rate than their White counterparts. We explored the barriers and facilitators to dietary and lifestyle changes and the acceptability of a diet and physical activity intervention in African Caribbean prostate cancer survivors. DESIGN: We conducted semistructured in-depth interviews and used thematic analysis to code and group the data. PARTICIPANTS AND SETTING: We recruited 14 African Caribbean prostate cancer survivors via letter or at oncology follow-up appointments using purposive and convenience sampling. RESULTS: A prostate cancer diagnosis did not trigger dietary and lifestyle changes in most men. This lack of change was underpinned by five themes: precancer diet and lifestyle, evidence, coping with prostate cancer, ageing, and autonomy. Men perceived their diet and lifestyle to be healthy and were uncertain about the therapeutic benefits of these factors on prostate cancer recurrence. They considered a lifestyle intervention as unnecessary because their prostate-specific antigen (PSA) level was kept under control by the treatments they had received. They believed dietary and lifestyle changes should be self-initiated and motivated, but were willing to make additional changes if they were perceived to be beneficial to health. Nonetheless, some men cited advice from health professionals and social support in coping with prostate cancer as facilitators to positive dietary and lifestyle changes. A prostate cancer diagnosis and ageing also heightened men's awareness of their health, particularly in regards to their body weight. CONCLUSIONS: A dietary and physical activity intervention framed as helping men to regain fitness and aid post-treatment recovery aimed at men with elevated PSA may be appealing and acceptable to African Caribbean prostate cancer survivors

Best emollients for eczema (BEE) – comparing four types of emollients in children with eczema: protocol for randomised trial and nested qualitative study

Introduction Atopic dermatitis/eczema affects around 20% of children and is characterised by inflamed, dry, itchy skin. Guidelines recommend ‘leave-on’ emollients that are applied directly to the skin to add or trap moisture and used regularly, they can soothe, enhance the skin barrier and may prevent disease ‘flares’. However, the suitability of the many different emollients varies between people and there is little evidence to help prescribers and parents and carers decide which type to try first.Methods and analysis Design: pragmatic, multicentre, individually randomised, parallel group superiority trial of four types of emollient (lotions, creams, gel or ointments).Setting: general practitioner surgeries in England.Participants: children aged over 6 months and less than 12 years with mild-to-severe eczema and no known sensitivity to study emollients.Interventions: study-approved lotion, cream, gel or ointment as the only leave-on emollient for 16 weeks, with directions to apply twice daily and as required. Other treatments, such as topical corticosteroids, used as standard care.Follow-up: 52 weeks.Primary outcome: validated patient-orientated eczema measure measured weekly for 16 weeks.Secondary outcomes: eczema signs (Eczema Area Severity Index) by masked researcher, treatment use, parent satisfaction, adverse events, child and family quality of life (Atopic Dermatitis Quality of Life, Child Health Utility 9D and Dermatitis Family Impact).Sample size: 520 participants (130 per group).Analysis: intention-to-treat using linear mixed models for repeated measures.Nested qualitative study: audio-recording of sample of baseline appointments and up to 60 interviews with participants at 4 and 16 weeks, interviews to be transcribed and analysed thematically.Ethics and dissemination Ethics approval granted by the NHS REC (South West - Central Bristol Research Ethics Committee 17/SW/0089). Findings will be presented at conferences, published in open-access peer-reviewed journals and the study website; and summaries shared with key stakeholders

Towards implementing exercise into the prostate cancer care pathway: development of a theory and evidence-based intervention to train community-based exercise professionals to support change in patient exercise behaviour (The STAMINA trial)

Abstract Background The National Institute for Health and Care Excellence (NICE) recommend that men on androgen deprivation therapy (ADT) for prostate cancer should receive supervised exercise to manage the side-effects of treatment. However, these recommendations are rarely implemented into practice. Community-based exercise professionals (CBEPs) represent an important target group to deliver the recommendations nationally, yet their standard training does not address the core competencies required to work with clinical populations, highlighting a need for further professional training. This paper describes the development of a training package to support CBEPs to deliver NICE recommendations. Methods Development of the intervention was guided by the Medical Research Council guidance for complex interventions and the Behaviour Change Wheel. In step one, target behaviours, together with their barriers and facilitators were identified from a literature review and focus groups with CBEPs (n = 22) and men on androgen deprivation therapy (n = 26). Focus group outputs were mapped onto the Theoretical Domains Framework (TDF) to identify theoretical constructs for change. In step two, behaviour change techniques and their mode of delivery were selected based on psychological theories and evidence to inform intervention content. In step three, the intervention was refined following delivery and subsequent feedback from intervention recipients and stakeholders. Results Six modifiable CBEPs target behaviours were identified to support the delivery of the NICE recommendations. Nine domains of the TDF were identified as key determinants of change, including: improving knowledge and skills and changing beliefs about consequences. To target the domains, we included 20 BCTs across 8 training modules and took a blended learning approach to accommodate different learning styles and preferences. Following test delivery to 11 CBEPs and feedback from 28 stakeholders, the training package was refined. Conclusion Established intervention development approaches provided a structured and transparent guide to intervention development. A training package for CBEPs was developed and should increase trust amongst patients and health care professionals when implementing exercise into prostate cancer care. Furthermore, if proven effective, the development and approach taken may provide a blueprint for replication in other clinical populations where exercise has proven efficacy but is insufficiently implemented

Acceptability of dietary and physical activity lifestyle modification for men following radiotherapy or radical prostatectomy for localised prostate cancer:a qualitative investigation

Abstract Background The experience and acceptability of lifestyle interventions for men with localised prostate cancer are not well understood, yet lifestyle interventions are increasingly promoted for cancer survivors. We explored the opinions, experiences and perceived acceptability of taking part in nutritional and physical activity interventions amongst men with prostate cancer and their partners; with the ultimate plan to use such information to inform the development of nutritional and physical activity interventions for men with prostate cancer. Methods Semi-structured interviews with 16 men, and seven partners, undergoing curative surgery or radiotherapy for prostate cancer. Interviews explored experiences of lifestyle interventions, acceptable changes participants would make and perceived barriers and facilitators to change. Interviews were thematically analysed using the framework approach. Results Men were frequently open to lifestyle modification and family support was considered vital to facilitate change. Health beneficial, clinician endorsed, understandable, enjoyable interventions were perceived as attractive. Barriers included ‘modern’ digital technology, poor weather, competing commitments or physical limitations, most notably incontinence following radical prostatectomy. Men were keen to participate in research, with few negative aspects identified. Conclusions Men are willing to change behaviour but this needs to be supported by clinicians and health professionals facilitating lifestyle change. An ‘intention-behaviour gap’, when an intended behaviour does not materialise, may exist. Digital technology for data collection and lifestyle measurement may not be suitable for all, and post-surgery urinary incontinence is a barrier to physical activity. These novel findings should be incorporated into lifestyle intervention development, and implemented clinically