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Patients' perspectives on acromegaly diagnostic delay: a qualitative study
Jordan Sibeoni1,2, Emilie Manolios2,3, Laurence Verneuil2
1Service Universitaire de Psychiatrie de l'Adolescent, Argenteuil Hospital Centre, Argenteuil, France.
European Journal of Endocrinology
|April 3, 2019
Summary
Patients with acromegaly experience significant diagnostic delays, leading to severe psychosocial distress. Improving the doctor-patient encounter is crucial for timely diagnosis and better patient outcomes.
Area of Science:
- Endocrinology
- Qualitative Health Research
- Patient Experience
Background:
- Acromegaly diagnosis is often delayed, increasing comorbidity risk and psychosocial decline.
- Qualitative methods are ideal for understanding patient perspectives but are underutilized in acromegaly research.
- Exploring patient experiences can reveal barriers to timely diagnosis.
Purpose of the Study:
- To explore the patient experience of the diagnostic pathway for acromegaly.
- To identify factors contributing to diagnostic delay in acromegaly.
- To gather patient suggestions for improving the acromegaly diagnostic process.
Main Methods:
- Qualitative study utilizing 20 face-to-face unstructured interviews.
- Purposive sampling of acromegaly patients until data saturation.
- Thematic analysis of interview data to identify key themes.
Main Results:
- Four themes emerged: pre-diagnosis experiences, post-diagnosis experiences, doctor's interaction style, and suggestions for reducing delay.
- Diagnostic delay is strongly linked to the doctor-patient relationship.
- The disease experience is described as catastrophic by patients, both before and after diagnosis.
Conclusions:
- Acromegaly diagnosis necessitates increased medical awareness and proactive involvement.
- Integrating patient-expert insights into medical education can enhance awareness.
- Endocrinologists must address the profound psychological impact of acromegaly and facilitate patient expression to mitigate negative consequences.