Factors affecting engagement in screening clinics ; exploring the experiences of patients with rare endocrine gene disorders

The aim was to explore the patient experience of those attending screening appointments for rare endocrine syndromes. Obtaining insights into the factors that potentially enhanced or detracted from attendance and engagement with the clinics could assist in developing strategies to promote patient engagement. A qualitative approach using semi-structured interviews was employed to understand individuals' perceptions and experience of the screening clinics. Twelve interviews were conducted with patients (age 10-66 years, purposive sampling). Four main themes were identified: (1) Perception at a distance, (2) Seeing my future self (3) The body and person in clinic and (4) The patient or doctor, who knows best? These highlighted several areas which could be used to inform approaches to promote enhanced patient engagement: the importance of careful management of projections of self, balancing information overload and honesty, interpersonal relationships and humanisation of care and assisting with the early navigation for the non-expert individual.