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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) participants' 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.
This article was published in the following journal.
Name: European journal of endocrinology
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Chemicals administered to patients in order to diagnose or study the pathology of medical conditions, diseases, or syndromes.
A work that reports on the results of a clinical study in which participants may receive diagnostic, therapeutic, or other types of interventions, but the investigator does not assign participants to specific interventions (as in an interventional study).
Work that is a report of a pre-planned, usually controlled, clinical study of the safety and efficacy of diagnostic, therapeutic, or prophylactic drugs, devices, or techniques based on several hundred volunteers, including a limited number of patients, and conducted over a period of about two years in either the United States or a foreign country.
Work that is a report of a pre-planned, usually controlled, clinical study of the safety and efficacy of diagnostic, therapeutic, or prophylactic drugs, devices, or techniques after phase II trials. A large enough group of patients is studied and closely monitored by physicians for adverse response to long-term exposure, over a period of about three years in either the United States or a foreign country.
Research that derives data from observation, interviews, or verbal interactions and focuses on the meanings and interpretations of the participants (From Holloway and Wheeler, "Ethical issues in qualitative nursing research," Nursing Ethics, 1995 Sep; 2(3): 223-232).
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