Unmet needs in Cushing’s syndrome: the patients’ perspective
Author
Valassi, Elena
Chiodini, Iacopo
Feelders, Richard A.
Andela, Cornelie D.
Abou-Hanna, Margueritta
Idres, Sarah
Tabarin, Antoine
Publication date
2022ISSN
2049-3614
Abstract
Background: Cushing’s syndrome (CS) is a rare condition of chronically elevated cortisol levels resulting in diverse comorbidities, many of which endure beyond successful treatment affecting the quality of life. Few data are available concerning patients’ experiences of diagnosis, care and persistent comorbidities. Objective: To assess CS patients’ perspectives on the diagnostic and care journey to identify unmet therapeutic needs. Methods: A 12-item questionnaire was circulated in 2019 by the World Association for Pituitary Organisations. A parallel, 13-item questionnaire assessing physician perceptions on CS patient experiences was performed. Results: Three hundred twenty CS patients from 30 countries completed the questionnaire; 54% were aged 35–54 and 88% were female; 41% were in disease remission. The most burdensome symptom was obesity/weight gain (75%). For 49% of patients, time to diagnosis was over 2 years. Following treatment, 88.4% of patients reported ongoing symptoms including, fatigue (66.3%), muscle weakness (48.8%) and obesity/weight gain (41.9%). Comparisons with delay in diagnosis were significant for weight gain (P = 0.008) and decreased libido (P = 0.03). Forty physicians completed the parallel questionnaire which showed that generally, physicians poorly estimated the prevalence of comorbidities, particularly initial and persistent cognitive impairment. Only a minority of persistent comorbidities (occurrence in 1.3–66.3%; specialist treatment in 1.3–29.4%) were managed by specialists other than endocrinologists. 63% of patients were satisfied with treatment. Conclusion: This study confirms the delay in diagnosing CS. The high prevalence of persistent comorbidities following remission and differences in perceptions of health between patients and physicians highlight a probable deficiency in effective multidisciplinary management for CS comorbidities.
Document Type
Article
Document version
Published version
Language
English
Subject (CDU)
61 - Medical sciences
Keywords
Síndrome de Cushing
Gestió
Experiència del pacient
Enquesta de pacients
Qualitat de vida
Síndrome de Cushing
Gestión
Experiencia del paciente
Encuesta de pacientes
Calidad de vida
Cushing’s syndrome
Management
Patient experience
Patient survey
Quality of life
Pages
10
Publisher
Bioscientifica Ltd
Collection
11
Is part of
Endocrine Connections
Citation
Valassi, Elena; Chiodini, Iacopo; Feelders, Richard A. [et al.]. Unmet needs in Cushing’s syndrome: the patients’ perspective. Endocrine Connections, 2022, 11, e220027. Disponible en: <https://ec.bioscientifica.com/view/journals/ec/11/7/EC-22-0027.xml>. Fecha de acceso: 3 oct. 2022. DOI: 10.1530/EC-22-0027
Link to the related item
This item appears in the following Collection(s)
- Ciències de la Salut [740]
Rights
This work is licensed under a Creative Commons Attribution 4.0 International License.
Except where otherwise noted, this item's license is described as https://creativecommons.org/licenses/by/4.0/