Promoting patient engagement in regular screening.
Research type
Research Study
Full title
Better health for people with rare endocrine disorders: promoting patient engagement in regular screening.
IRAS ID
244880
Contact name
Samia Elyoussfi
Contact email
Sponsor organisation
Chair, Brunel University London Research Ethics committee
Duration of Study in the UK
2 years, 4 months, 0 days
Research summary
Summary of research
People with rare genetic endocrine disorders can develop unpredictable new tumour formation. Lack of engagement in screening for tumours can lead to significant negative impacts on health for the individual and greater demands on health services in the long term. At present, patient engagement is variable and little is known about the optimal factors that influence decision-making around participation in screening services or the optimal type of guidance needed to effectively engage patients. The aim of the proposed research is to understand how patients’ decision-making may be better supported to enhance engagement in regular screening services.This is a mixed methods study design in three phases. First, a cross-sectional retrospective audit of the cohort will seek to characterise subgroups with reference to attendance at the screening programme. Findings may provide new information on those most likely to engage with screening, those who attend sporadically and those who are ‘hard to reach'. Next, a small group of adult and child patients, known to the service will be interviewed about how they experience engaging in screening. Finally, through three focus groups, adult patients will be supported to produce patient-led information resources, such as an information booklet, which will be designed to promote patients' future engagement in screening. Each focus group will have a different objective; group one will scope the required content; group two will develop the resource design and group three will review and finalise the resources.
Project outcomes (October 2019) will be the factors that impact on engagement (identified from medical records and patients’ experience of engagement) and the patient-led resources to support patient decision-making in screening engagement. Barts charity is funding the research, and recruitment will be from the Barts endocrine screening programme.
Summary of Results
Study 1, a retrospective cohort study, identified an 83.27% attendance rate. Attendance showed no significant association with patient demographic characteristics. Study 2 interviews illuminated how the complexities of living with an incurable diagnosis interacted with the anticipation and attendance at screening. Study 3, focus groups, resulted in a simple leaflet with signposting, noting the importance of reassurance and availability of family clinics. Whilst integration of the qualitative findings explored the relationship between the themes. These studies contribute to understanding of and engagement with patients with rare syndromes and screening. Considerations of data collection, life-course, diagnosis familiarity, family dynamics, practical accessibility and navigating the system are specific and novel insights that should inform future service delivery.REC name
London - Central Research Ethics Committee
REC reference
18/LO/1046
Date of REC Opinion
15 Jun 2018
REC opinion
Further Information Favourable Opinion