ArticleJournal of patient experience2025
Factors Affecting Engagement in Screening Clinics; Exploring the Experiences of Patients with Rare Endocrine Gene Disorders.
Article in Journal of patient experience, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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.
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