Patients' perspectives on acromegaly diagnostic delay: a qualitative study

Context: Acromegaly has a substantial diagnostic delay associated with an increased risk of comorbidities and psychosocial deterioration. Qualitative methods which focus on the ways that individuals understand and relate to what they are experiencing are the best methods for exploring patients' perspectives. To the best of our knowledge, they have not been developed in the context of acromegaly. Objectives: This study aimed to explore the experience of the diagnostic pathway of patients with acromegaly. Design: We conducted a qualitative study, based on 20 face-to-face unstructured interviews in a third referral Endocrinology center. Participants, purposively selected until data saturation, were patients with acromegaly with diverse disease durations, types of treatment or associated comorbidities. The data were examined by thematic analysis. Results: Our analysis found four themes: (i) what happened for patients before the diagnosis; (ii) what happened after; (iii) the style or type of doctor involved and (iv) patients' suggestions for limiting diagnostic delay. Our findings underlined the direct associations between diagnostic delay and the doctor-patient encounter, and the truly catastrophic experience of this disease, both before and after the diagnosis. Conclusions: Diagnosis of acromegaly requires active medical involvement and awareness. Intervention of patient-experts in medical schools may help to be more aware of this disease. Endocrinologists caring for patients with acromegaly should also address the catastrophic dimension of the patient's experience and initiate the narrative to help them to put it into words for preventing harmful consequences such as social isolation and QoL impairment, but also anxiety or depression.