Reducing Health Inequalities Implementation Theme. Briefing Paper 2: How to incorporate attention to inequality in CLAHRC (SY) activity.

In Briefing Paper 1 we set out the rationale for having an "Inequalities in health" theme as part of the CLAHRC (SY) activity. In this second briefing paper we show how research conducted under the aegis of CLAHRC (SY) can address issues of health inequality

Ethical challenges in conducting clinical research in lung cancer

The article examines ethical challenges that arise with clinical lung cancer research focusing on design, recruitment, conduct and dissemination. Design: problems related to equipoise can arise in lung cancer studies. Equipoise is an ethics precondition for RCTs and exists where there is insufficient evidence to decide which of two or more treatments is best. Difficulties arise in deciding what level of uncertainty constitutes equipoise and who should be in equipoise, for example, patients might not be even where clinicians are. Patient and public involvement (PPI) can reduce but not remove the problems. Recruitment: (I) lung cancer studies can be complex, making it difficult to obtain good quality consent. Some techniques can help, such as continuous consent. But researchers should not expect consent to be the sole protection for participants’ welfare. This protection is primarily done elsewhere in the research process, for example, in ethics review; (II) the problem of desperate volunteers: some patients only consent to a trial because it gives them a 50/50 option of the treatment they want and can be disappointed or upset if randomised to the other arm. This is not necessarily unfair, given clinical equipoise. However, it should be avoided where possible, for example, by using alternative trial designs; (III) the so-called problem of therapeutic misconception: this is the idea that patients are mistaken if they enter trials believing this to be in their clinical best interest. We argue the problem is misconceived and relates only to certain health systems. Conduct: lung cancer trials face standard ethical challenges with regard to trial conduct. PPI could be used in decisions about criteria for stopping rules. Dissemination: as in other trial areas, it is important that all results, including negative ones, are reported. We argue also that the role of PPI with regard to dissemination is currently under-developed

Reasons for missed appointments with a hepatitis C outreach clinic : a qualitative study

Background: Non-attendance in drug service hepatitis C outreach clinics means clients miss the opportunity of being given lifestyle advice and referral to hospital for assessment and treatment. A similar problem is experienced in other services throughout the UK. A qualitative study was undertaken to investigate the problem. Methods: Clients with a history of not attending the outreach clinic were invited to participate during a routine drug clinic appointment. A contact details sheet with a preferred telephone number was completed by those agreeing to take part. Verbal consent was taken and a telephone interview took place. The participants were remunerated for taking part with a five pounds high street voucher. The ‘framework method’ was used to analyse the data with key themes identified. Results: Twenty-eight telephone interviews were undertaken from April to June 2012. All the clients gave ‘prima-facie’ reasons for non-attendance including ‘not a priority’ and ‘forgot’. However, the study indicates these are insufficient to explain the various experiences and influences. Underlying reasons that impacted upon attendance were identified. These reasons relate to (i) client characteristics e.g. ‘priority’ to score drugs and the ‘cost of travel’ (ii) clinic service e.g. ‘difficult journey’ to the clinic and timing of the ‘appointment’. The reasons operated within a complex context where other factors had an impact including addiction, welfare policy, stigma and the nature of hepatitis C itself. Conclusion: The study revealed that beneath apparently simple explanations for non-attendance, such as clients’ chaotic lifestyle resulting in them forgetting or not being bothered to attend, there were far more complex and varied underlying reasons. This has important implications for drug policy including the need to better incorporate clients’ perspectives. Policy that is based only on the simple, surface reasons is unlikely to be effective. Keywords: Hepatitis C; missed appointments; Reasons; Outreach; Drug use; Telephone interview

Expectations of bariatric surgery: myths and reality

Introduction: Obesity is a chronic condition. Demand for surgical weight loss procedures funded by the NHS is increasing. Surgery is a recommended cost effective treatment and is often viewed ‘as a quick fix’. However through surgery alone, commissioners and clinicians are struggling to resolve the complex behavioural, social and metabolic problems linked to obesity. The literature on bariatric surgery is mainly quantitative in nature, focussing on clinical and quality of life outcome measures. The social narratives, experiences and influences of an obese person undergoing weight-loss surgery are rarely investigated. Existing qualitative research is mainly non-UK based and uses conventional methodologies to capture experiences. This study seeks to highlight the myths and realities of patient experience to inform clinical and commissioning professionals and future surgical pathways. This paper presents findings from the first stage of a longitudinal study. Methods: A qualitative longitudinal study using in-depth semi-structured interviews, Photovoice and framework analysis techniques. 15 patients interviewed pre and post bariatric surgery. Results: Themes focus on the negative impacts weight has on the quality of life for the participant and close family. Behaviours, life events and lack of self-control were suggested causes of obesity. The anticipated health benefits are the main motivation for undergoing bariatric surgery. Levels of knowledge and expectation vary between participants. Photovoice methodology is proving to have a unique role in capturing insight into the lived experiences of participants. Conclusion: Findings will provide insight to inform the implementation of NCEPOD recommendations and NICE Guidance for weight loss surgery. Conflict of Interest: None Funding: Research relating to this abstract was funded by Collaboration and Leadership for Applied Health Research and Care – South Yorkshire</p

Opening doors to treatment. Exploring the impact of lung cancer specialist nurses on access to anti-cancer treatment: an exploratory case study

This exploratory study examined how different Lung Cancer Nurse Specialists (LCNS) worked within their Multi-disciplinary Teams (MDT) to have a positive impact on patient access to anti-cancer treatment. The study used a mix of qualitative methods including individual and group interviews, observation and documentary analysis. The project was developed in response to the finding from the National Lung Cancer Audit (2010) that 64% of patients who saw a LCNS received anti-cancer treatment, compared to 30% of patients who did not see a LCNS. This project aims to generate insight to understand what it is the LCNS does that increases patient access to treatment. The aim of this study was to conduct an initial exploration to generate understanding of the role of the LCNS within the lung cancer multi-disciplinary team and identify factors that assist the LCNS in increasing treatment access for people with lung cancer and to generate recommendations for LCNS practice, MDT working and for future research

'Watchful insecurity' : a grounded theory to explain the meaning of recovery after a heart attack.

A heart attack can be devastating. If recovery is not well managed, such an event can seriously impair quality of life. However, recovery is a relatively unexplored concept in research. This study aimed to generate a theory to explain the meaning of heart attack recovery from the perspective of those who have encountered a heart attack. The theory of 'Watchful Insecurity" was developed. The study used a modified constructivist grounded theory methodology, incorporating qualitative methods and grounded theory analysis techniques. The sample included i) twenty four cardiac support group members who attended one of four group interviews ii) 10 patients six to eight months following their heart attack who participated in individual interviews iii) 10 informal interviews with people with "expert" conceptual knowledge. The theory of Watchful Insecurity emerged from the participants' stories and their perception that they were a different person after their heart attack. Watchful Insecurity is identified as an enduring state that dominates the process of recovery. Recovery is understood as a social process through which people come to live with and manage Watchful Insecurity. Thetriggers of Watchful Insecurity after a heart attack are identified. Different types and levels of "watchful insecurity" become apparent. The theory of Watchful Insecurity challenges the assumption that recovery follows a linear trajectory. Instead, recovery is experienced as a series of "peaks and troughs". Watchful Insecurity is a core category that applies to all, but the overall trajectory of recovery is unique for each individual. Tools that participants used in order to learn to deal with Watchful Insecurity are discussed. This study illuminates heart attack recovery by exploring it as a concept and a process. This understanding can be used in developing acceptable and accessible services to support recovery

Innovating access to the nurse-led hepatitis C clinic using co-production

Background Many reasons for missed appointments are given by people who inject drugs and it is suggested that one solution cannot solve this complex issue (Poll et al., 2017). Increasingly, nurses and other health professionals are expected to actively involve patients and service users in developing innovative, effective and accessible services. This project used co-production as the approach to address this challenge. Aims This paper describes how a co-production method was used to develop accessible nurse-led hepatitis C virus services for people who inject drugs. Methods Using research evidence from a study conducted by the lead author as a starting point, a series of co-production workshops were run using creative co-design methods to identify the barriers to engagement with clinics. Potential solutions were then co-produced. Results The solutions included myth-busting posters, peer-support, a mobile clinic van and the offer of incentives and enablers (travel costs or a reward for attendance). Conclusions The service-development project illustrates how, with the right methods, it is possible to successfully engage with hard-to-access groups to co-produce innovative solutions for an important clinical challenge

The influence of perceptions of frailty on treatment decision making in older people with lung cancer: a qualitative study (Abstract only)

Background Currently there is little research exploring the influence of perceptions of frailty on patients' or clinicians' decisions regarding treatment for older people with lung cancer. Existing research has identified that age is associated with variation in treatment and access to clinical trials. Multiple factors have also been found to influence treatment decision making among older people, including the oncologist's recommendations (Puts et al.2015). Frailty assessment tools have been developed that have the potential to support treatment decision making (Clegg et al. 2016) but their applicability to older people with lung cancer has not been explored. Aims To explore the perspectives of older people and healthcare staff on the influence of frailty on treatment decision making in lung cancer. Methods A prospective qualitative exploratory study was undertaken. Between September 2018 and April 2019 semi-structured interviews were conducted with older patients with lung cancer (n=10); and a range of health care professionals (n=12) including respiratory physicians, clinical nurse specialists and oncologists. The data were audio-recorded, transcribed verbatim and analysed using Framework Analysis. Results Three themes were identified. Perceptions of frailty: illustrates how participants viewed frailty and its relevance to their treatment. Decision making conversations: details the diverse factors that influence treatments offered and their uptake. Aspects of service delivery: considers the wider context in which treatment decisions are made and its influence upon decision making among clinicians and older service users. Discussion Our study revealed that perceptions of frailty often influenced treatment decisions made by and for older people with lung cancer. However, diverse factors were also important, including how patients perceive themselves in relation to dimensions of frailty and the perspectives of healthcare staff on the clinical utility of assessment tools. Conclusion This study identified diverse factors which may influence the acceptability and adoption of frailty assessment in practice