Evaluating the burden of endogenous Cushing’s syndrome using a web-based questionnaire and validated patient-reported outcome measures
Authors' conclusion
These results demonstrate a BOI in CS despite ongoing treatment and illustrate the need for interventions to address persistent symptoms, particularly weight gain, pain, and anxiety.
Study context
- Population
- Patients with endogenous Cushing's syndrome (CS) diagnosed ≥ 6 months prior who had received ≥ 1 treatment; 85% women, mean age 43.4 ± 12.3 years
- Participants
- 55 patients
- Outcome
- Burden of illness from first symptoms through treatment
Methodological detailsweb-enabled survey, 5 validated patient reported outcomes (PRO) measures
- Web-enabled survey
- 5 validated PRO measures
Main finding
As reported in the abstract
Burden of illness
- Mean gap between first symptoms and diagnosis
- 10 years
- Underwent surgical treatment
- 80%
- Days with symptoms in a typical month
- 16
- Moderate or severe fatigue (Brief Fatigue Inventory)
- 69%
- Participants reporting missed workdays due to CS symptoms
- 38%
- Annual average missed workdays among them
- 25
Observational data: associations, not effects.
Original publication
Evaluating the burden of endogenous Cushing’s syndrome using a web-based questionnaire and validated patient-reported outcome measures. Pituitary. Published 19 April 2023. doi:10. 1007/ s11102-023-01314-7
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