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dc.contributor.authorValassi, Elena
dc.contributor.authorChiodini, Iacopo
dc.contributor.authorFeelders, Richard A.
dc.contributor.authorAndela, Cornelie D.
dc.contributor.authorAbou-Hanna, Margueritta
dc.contributor.authorIdres, Sarah
dc.contributor.authorTabarin, Antoine
dc.date.accessioned2022-10-03T07:50:20Z
dc.date.available2022-10-03T07:50:20Z
dc.date.issued2022
dc.identifier.citationValassi, 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-22-0027ca
dc.identifier.issn2049-3614ca
dc.identifier.urihttp://hdl.handle.net/20.500.12328/3409
dc.description.abstractBackground: 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.en
dc.format.extent10ca
dc.language.isoengca
dc.publisherBioscientifica Ltdca
dc.relation.ispartofEndocrine Connectionsca
dc.relation.ispartofseries11
dc.relation.urihttps://ec.bioscientifica.com/view/journals/ec/11/7/EC-22-0027.xmlca
dc.rightsThis work is licensed under a Creative Commons Attribution 4.0 International License.en
dc.rights.urihttps://creativecommons.org/licenses/by/4.0/
dc.subject.otherSíndrome de Cushingca
dc.subject.otherGestióca
dc.subject.otherExperiència del pacientca
dc.subject.otherEnquesta de pacientsca
dc.subject.otherQualitat de vidaca
dc.subject.otherSíndrome de Cushinges
dc.subject.otherGestiónes
dc.subject.otherExperiencia del pacientees
dc.subject.otherEncuesta de pacienteses
dc.subject.otherCalidad de vidaes
dc.subject.otherCushing’s syndromeen
dc.subject.otherManagementen
dc.subject.otherPatient experienceen
dc.subject.otherPatient surveyen
dc.subject.otherQuality of lifeen
dc.titleUnmet needs in Cushing’s syndrome: the patients’ perspectiveen
dc.typeinfo:eu-repo/semantics/articleca
dc.description.versioninfo:eu-repo/semantics/publishedVersionca
dc.rights.accessLevelinfo:eu-repo/semantics/openAccess
dc.embargo.termscapca
dc.subject.udc61ca
dc.identifier.doihttps://dx.doi.org/10.1530/EC-22-0027ca


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