The experiences of patients with oesophageal cancer receiving chemoradiotherapy treatment: a qualitative study embedded in the SCOPE2 trial.

OBJECTIVES: This qualitative study explored patients' experiences and perceptions of the SCOPE2 trial. SCOPE2 examined radiotherapy dose escalation in patients with inoperable oesophageal cancer treated with definitive chemoradiotherapy (dCRT). SETTING: Recruitment at five clinical sites in England and Wales, UK. PARTICIPANTS: SCOPE2 trial participants were invited to take part in interviews from across five clinical sites. Participants self-selected to take part in up to three interviews across four different time points: baseline (before treatment) and at 2-3 months, 3-6 months or 6 months+ after baseline. There were five female and five male interview participants. INTERVENTIONS: Participants were randomised to standard dose dCRT prescribed carboplatin/paclitaxel or cisplatin/capecitabine, or an escalated dose dCRT prescribed carboplatin/paclitaxel or cisplatin/capecitabine. METHODS: This qualitative study used semistructured longitudinal interviews to explore the impact of treatment on patient outlook and quality of life and the impact of the COVID-19 pandemic. Interview data were thematically analysed. RESULTS: 10 patients participated in 16 longitudinal interviews. Three participants were accompanied by companions. Participants experienced side-effects from radiotherapy and chemotherapy including nausea, throat pain, difficulties eating and regaining appetite, thrombosis and fatigue, although most of these symptoms gradually improved. Participants required more ongoing information and support regarding treatment side-effects and cancer status in order to improve their overall quality of life. Best practice examples involved key contacts providing practical advice and signposting support. CONCLUSION: Participants of the SCOPE2 trial reported short and longer-term side-effects from chemoradiotherapy, but these usually lessened over time. Participants attempted to be positive about their survival prospects by readjusting their expectations, priorities and lifestyles. Providing patients with ongoing opportunities to discuss detailed and timely information regarding treatment side-effects, aftercare and cancer status could improve the overall health and well-being of patients during oesophageal cancer trials and pathways. TRIAL REGISTRATION NUMBER: NCT02741856; ISRCTN: 97125464.

Understanding how shared decision-making approaches and patient aids influence patients with advanced cancer when deciding on palliative treatments and care: A realist review.

BACKGROUND: Patients with advanced incurable cancer face difficult decisions about palliative treatment options towards their end of life. However, they are often not provided with the appropriate information and support that is needed to make informed decisions. This review aimed to identify contexts and mechanisms associated with communication tools, patient decision-aids and shared decision-making (SDM) approaches that influence patient outcomes. METHODS: We used a realist review method to search for published studies of patients (adults > 18) with advanced cancer who were expected to make a decision about palliative treatment and/or supportive care in consultation with healthcare practitioners. We appraised and synthesised literature describing the contexts of (when and how) decision aids and SDM approaches are used, and how these contexts interact with mechanisms (resources and reasoning) which impact patient outcomes. Stakeholders including academics, palliative healthcare professionals (HCPs) and people with lived experience of supporting people with advanced incurable cancer contributed to identifying explanatory accounts. These accounts were documented, analysed and consolidated to contribute to the development of a programme theory. RESULTS: From the 33 included papers, we consolidated findings into 20 explanatory accounts to develop a programme theory that explains key contexts and mechanisms that influence patient and SDM. Contexts include underlying patients' and HCPs' attitudes and approaches. These need to be understood in relation to key mechanisms, including presenting information in multiple formats and providing adequate time and opportunities to prepare for and revisit decisions. Contexts influenced mechanisms which then influence the levels of patient decisional satisfaction, conflict and regret. CONCLUSIONS: Our programme theory highlights mechanisms that are important in supporting shared treatment decisions for advanced noncurative cancer. The findings are informative for developing and evaluating interventions to improve understanding and involvement in SDM for patients with advanced incurable cancer. PATIENT AND PUBLIC CONTRIBUTION: We included patient and public involvement (PPI) representatives in four stakeholder meetings. PPI helped to define the scope of the review, identify their unique experiences and perspectives, synthesise their perspectives with our review findings, make decisions about which theories we included in our programme theory and develop recommendations for policy and practice and future research.

Feasibility and acceptability of a community pharmacy referral service for suspected lung cancer symptoms.

BACKGROUND: Lung cancer survival rates in the UK are among the lowest in Europe, principally due to late-stage diagnosis. Alternative routes to earlier diagnosis of lung cancer are needed in socioeconomically deprived communities that are disproportionately affected by poor lung cancer outcomes. We assessed the feasibility and acceptability of a community-based pharmacy referral service to encourage earlier symptomatic referral for chest X-rays. METHODS: Seventeen community pharmacies located in a deprived area of Wales participated between March 2019 and March 2020. Stakeholder interviews were conducted with four patients, seven pharmacy professionals and one general practitioner. Four focus groups were conducted, including one with healthcare professionals (n=6) and three with members of the public who were current and former smokers (n=13). Quantitative data regarding patient characteristics and clinical outcomes were collected from hospital records and patient referral questionnaires completed by pharmacists and analysed using descriptive statistics. Qualitative data sets were analysed thematically and triangulated. RESULTS: Twelve patients used the pharmacy referral service, all of whom were male. Average length of the pharmacy consultation was 13 min, with a mean 3 days to accessing chest X-rays in secondary care. Patients experienced a mean 46-day wait for results, with no lung cancer detected. Participants found the service to be acceptable and considered the pharmacy element to be broadly feasible. Perceived barriers included low awareness of the service and concerns about the role and capacity of pharmacists to deliver the service. Facilitators included perceived approachability and accessibility of pharmacists. A well-publicised, multifaceted awareness campaign was recommended. CONCLUSIONS: A community pharmacy referral service for lung symptoms was considered an acceptable alternative pathway to symptomatic diagnosis of lung cancer in deprived communities. Wider implementation of the service would require workforce capacity and training to be addressed to ensure optimum utilisation and promotion of the service.

"I'd Like to Have More of a Say Because It's My Body": Adolescents' Perceptions Around Barriers and Facilitators to Shared Decision-Making.

PURPOSE: Adolescents living with long-term conditions (LTCs) often feel as though they are left out of discussions and decisions with healthcare professionals, which can give them the impression that their views are not important. Research around decision-making during clinical encounters often fails to represent adolescents' perspectives. This study explores adolescents' perceptions and experiences, focusing on identifying the perceived barriers to, and facilitators for, their involvement in shared decision-making (SDM). METHODS: Nineteen adolescents (aged 13-19 years) with LTCs were recruited from endocrinology, rheumatology, neurology, and nephrology clinics. Participatory qualitative interviews were conducted using life grids and pie charts, and transcripts were analyzed thematically. RESULTS: Four overarching themes and nine sub-themes were identified which describe barriers and facilitators around SDM. Adolescents need to feel, as though their involvement is supported by parents and healthcare professionals, that their contribution to the decision-making process is important and will yield a positive outcome. Adolescents often feel it is their right to be involved in decisions that affect them but also feel as though the adults' contributions to the decisions are considered more valuable. Adolescents need to feel capable of being involved, in terms of being able to understand and process information about the available options and ask appropriate questions. CONCLUSIONS: This work highlights a number of ways SDM can be facilitated between healthcare practitioners and adolescents with LTCs. Identifying the needs of adolescents with LTCs is necessary for optimizing the SDM process and to support them during healthcare consultations.

Implementing Prudent Healthcare in the NHS in Wales; what are the barriers and enablers for clinicians?

RATIONALE: Prudent Healthcare is a strategy adopted by the Welsh Government in response to the challenge of improving health care during times of austerity and when needs and demand are rising. Four principles underlie Prudent Healthcare: to achieve health and wellbeing through co production; care for those with the greatest health needs first; do only what is needed; and reduce inappropriate variation. For Prudent Healthcare to be implemented in Wales, it is necessary for health professionals to adopt these principles in practice. OBJECTIVE: This paper reports a qualitative evaluation of clinicians' awareness, experiences, and views about Prudent Healthcare, identifying barriers and enablers to implementation from the clinician's perspective. METHODS: Semi-structured interviews (n = 28) and five focus groups (with 23 participants) were undertaken with a diverse range of health professionals working in primary and secondary care. Analysis was underpinned by the COM-B model which provides a framework to understand behaviour change in context using three domains, Capability, Opportunity, and Motivation. RESULTS: Clinicians reported the importance and challenges of accessing and sharing information and evidence to inform practice (Capability). Reduced staffing levels and service availability were highlighted as possible barriers to Prudent Healthcare implementation while multidisciplinary working and reorganization of staff roles and services were considered enablers (Opportunity). Finally, although the principles of Prudent Healthcare were broadly welcomed (Motivation), a lack of awareness of the initiative and the management of patient expectations presented barriers. CONCLUSION: While there was a positive response and widespread support for the principles of Prudent Healthcare by clinicians, increasing awareness of the initiative and improvement to systems to enable information sharing and the monitoring of patient outcomes could improve the consistency of implementation.

Coproduction and health: Public and clinicians' perceptions of the barriers and facilitators.

BACKGROUND: Coproduction is an approach increasingly recognized across public services internationally. However, awareness of the term and the barriers and facilitators to its implementation in the NHS are not widely understood. This study examines clinician and public perceptions of coproduction within the context of the Prudent Healthcare initiative. OBJECTIVES: To provide insights into how coproduction is viewed by clinicians and the public and identify perceived barriers and facilitators to its implementation. DESIGN: Using qualitative research methods, interviews were conducted with the public (n = 40) and clinicians (n = 40). Five focus groups were also conducted with the public (n = 45) and six focus groups with clinicians (n = 26). The COM-B model was used to analyse the data; key domains include Capability, Opportunity and Motivation. SETTING: This is an all-Wales study, involving six Health Boards, an NHS trust and community and patient groups. RESULTS: Key barriers relating to Capability include lack of awareness of the term coproduction and inadequate communication between clinicians and citizens. Opportunity-centred barriers include service and time constraints. Conversely, facilitators included utilizing partnerships with community organizations. Motivation-related barriers included preconceptions about patients' limitations to coproduce. CONCLUSIONS: There were broadly positive perceptions among participants regarding coproduction, despite initial unfamiliarity with the term. Despite study limitations including underrepresentation of employed public participants and junior doctors, our analysis may assist researchers and policymakers who are designing, implementing and evaluating interventions to promote coproduction.

Training of Residential Social Care Staff to Meet the Needs of Older People with Intellectual Disabilities who Develop Age-Related Health Problems: An Exploratory Study.

BACKGROUND: Despite awareness of the age related health needs of people with intellectual disabilities little is known regarding how residential social care staff are prepared to meet such needs. METHODS: Data were gathered via semi-structured interviews from 14 managers of supported living settings. Transcripts were thematically analysed. FINDINGS: Staff may work in supported living settings with no prior experience of care work, and previous knowledge/experience of supporting people in relation to their health is not required. Whilst health related training is provided there is a lack of specific training regarding healthy ageing, and training seems to be reactive to changing needs of tenants meaning that proactive monitoring for changes in health status may not occur. CONCLUSIONS: Whilst some training is provided for residential social care staff in relation to health and ageing a more proactive approach is required which should include a focus on healthy ageing.

Meeting the health needs of older people with intellectual disabilities: exploring the experiences of residential social care staff.

Older people with intellectual disabilities often experience high levels of health needs and multiple morbidities but they may be supported by residential care staff with little or no previous experience of identifying and meeting health needs. Little is known regarding how they undertake this health-related role and this exploratory study seeks to address this gap. A purposive sample of 14 managers of supported living accommodation in Wales were interviewed in 2014 to determine their experiences of supporting tenants in relation to age-related health needs. The semi-structured interviews were transcribed and thematically analysed. Three of the emerging themes are reported in this paper: meeting health needs, the consequences of ageing and relationships. Findings indicate that residential care staff support older people with intellectual disabilities with complex and multiple health needs: they monitor health status, support access to healthcare, provide additional support arising from changing health needs and advocate for tenants in the context of healthcare. However, their role is often not understood by healthcare professionals. The importance of staff having a long-term relationship with those they support was identified as being important to identifying any health-related changes. The need to develop effective relationships with healthcare staff was also noted. It is concluded that there is a need for better understanding among health staff of the role of residential social care workers and for further research regarding health-related communication.