ArticleEndocrine connections2020
Acromegaly and the information gap: patient perceptions of the journey from primary to tertiary care.
Article in Endocrine connections, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
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Who cites it
4 citing papers in PubMed.
- Disease burden, treatment experiences and preferences in patients with acromegaly: a qualitative study.Frontiers in endocrinology · 2026Article
- Evidence of inequities experienced by the rare disease community with respect to receipt of a diagnosis and access to services: a scoping review of UK and international evidence.Orphanet journal of rare diseases · 2025Article
- A Cross-Sectional Study of Quality of Life, Treatment Adherence, and Health-Seeking Behavior in Turkish Patients with Rheumatoid Arthritis: Gender and Education as Key Predictors.Patient preference and adherence · 2025Article
- Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveAcromegaly is a rare condition and there is often a long path to diagnosis for many patients. We sought to explore patient's perceptions and understanding of acromegaly, to examine the quality of communication and find gaps in the information provided at diagnosis.
designA prospective study using qualitative research methodology and grounded theory. A semi-structured interview was conducted with 18 patients treated for acromegaly in a single tertiary centre and verbatim transcripts were thematically analysed for overarching themes.
resultsEighteen patients with acromegaly were interviewed. The mean age of participants was 52 (range 30-72). Four overarching themes emerged; (1) Patients rely on online resources to understand acromegaly in the time between diagnosis and tertiary care clinic; (2) There is not enough support available for patients; (3) Patients have a basic understanding of acromegaly and associated conditions, but the long-term impact is underestimated; and (4) Patients initially felt intimidated by the multidisciplinary team panel, but overall found it useful.
conclusionAcromegalic patients have a strong need for information at the point of initial diagnosis, in particular online resources and interaction with other experienced patients. Wider dissemination of patient educational resources into primary and secondary care settings may improve overall patient satisfaction, treatment adherence and subsequent health care provider-patient relationships.
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