ISSN 1470-3947 (print) | ISSN 1479-6848 (online)

Endocrine Abstracts (2019) 63 P253 | DOI: 10.1530/endoabs.63.P253

What patients with acromegaly have to say about their diagnostic pathway: A qualitative study

Jordan Sibeoni1,2, Emilie Manolios2,3, Laurence Verneuil2, Philippe Chanson4,5 & Anne Revah-Levy1,2


1Service Universitaire de Psychiatrie de l’Adolescent. Centre Hospitalier, Argenteuil, France; 2ECSTRA Team, UMR-1153, Inserm, Paris Diderot University, Sorbonne Paris Cité, Paris, France; 3Service de Psychologie et Psychiatrie de Liaison et d’Urgences, Hôpital Européen Georges Pompidou AP-HP, Hôpitaux Universitaires Paris Ouest, Paris, France; 4Service d’Endocrinologie et des mladies de la Reproduction, Centre de référence des Maladies rares de l’Hypophyse, Hôpital de Bicêtre, Le Kremlin Bicêtre, France; 5UMR S1185, Faculté de Médecine Paris-Sud, Université Paris-Sud, Le Kremlin-Bicêtre, France.


Background: Acromegaly is a rare disease with a long and complex diagnostic pathway leading to a substantial diagnostic delay associated with an increased risk of comorbidities and psychosocial deterioration. Qualitative methods are the gold standard to explore patients’ perspectives, focusing on how individuals understand and report what they are experiencing. To the best of our knowledge, no qualitative study has yet examined the diagnostic pathway of subjects with acromegaly. This study aimed to fill this gap.

Methods: Face-to-face unstructured interviews were conducted by experienced qualitative researchers in a third referral Endocrinology center. Participants, purposively selected until data saturation was reached, were patients with acromegaly with various disease durations, types of treatment, or associated comorbidities. The data were examined by thematic analysis.

Results: Twenty patients with acromegaly, 11 women and 9 men, were included. The duration of misdiagnosis and uncertainty resulting in diagnostic delay ranged between 3 and 16 years (mean, 8 years). Our analysis shows four themes; (i) what happened for patients before the diagnosis, with the early symptoms the patients perceived, but also the terror they felt not to recognize themselves and the lack of understanding, (ii) what happened after, with the tragic ending of the diagnostic assessment and how they look at the damage retrospectively; (iii) the style or type of doctor involved, the ones they met before the right diagnosis, at diagnosis and after and (iv) participants’ suggestions for limiting diagnostic delay, with two suggestions, one concerning directly doctor training and the other involving how society, patients, and others look at people with acromegaly, as well as the need to look more attentively at oneself and at others

Conclusion: Our findings underline 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. Limiting diagnostic delay requires an active involvement and awareness of any doctor, especially primary care providers. We suggest several practical implications such as the intervention of patient-experts in medical schools or a statement that all physicians can use to address the catastrophic dimension of their patients’ experiences and to support them in this process.

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