{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,5]],"date-time":"2026-11-05T22:29:22Z","timestamp":1793917762227,"version":"4.8.0"},"reference-count":28,"publisher":"Bioscientifica","issue":"7","license":[{"start":{"date-parts":[[2022,7,1]],"date-time":"2022-07-01T00:00:00Z","timestamp":1656633600000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["ec.bioscientifica.com"],"crossmark-restriction":true},"short-container-title":[],"published-print":{"date-parts":[[2022,7,1]]},"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Cushing\u2019s 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\u2019 experiences of diagnosis, care and persistent comorbidities.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To assess CS patients\u2019 perspectives on the diagnostic and care journey to identify unmet therapeutic needs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Three hundred twenty CS patients from 30 countries completed the questionnaire; 54% were aged 35\u201354 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 (\n                      <jats:italic>P<\/jats:italic>\n                      \u2009=\u20090.008) and decreased libido (\n                      <jats:italic>P<\/jats:italic>\n                      \u2009=\u20090.03). 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\u201366.3%; specialist treatment in 1.3\u201329.4%) were managed by specialists other than endocrinologists. 63% of patients were satisfied with treatment.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1530\/ec-22-0027","type":"journal-article","created":{"date-parts":[[2022,6,14]],"date-time":"2022-06-14T13:52:04Z","timestamp":1655214724000},"update-policy":"https:\/\/doi.org\/10.1530\/crossmarkpolicy-10","source":"Crossref","is-referenced-by-count":21,"title":["Unmet needs in Cushing\u2019s syndrome: the patients\u2019 perspective"],"prefix":"10.1530","volume":"11","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3864-0105","authenticated-orcid":true,"given":"Elena","family":"Valassi","sequence":"first","affiliation":[{"name":"Endocrinology Department, Germans Trias i Pujol Hospital and Research Institute, Badalona, Barcelona, Spain"},{"name":"IRCCS, Istituto Auxologico Italiano, Milan, Italy"},{"name":"Department of Medical Biotechnology and Translational Medicine, University of Milan, Milan, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Iacopo","family":"Chiodini","sequence":"additional","affiliation":[{"name":"IRCCS, Istituto Auxologico Italiano, Milan, Italy"},{"name":"Department of Medical Biotechnology and Translational Medicine, University of Milan, Milan, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Richard A","family":"Feelders","sequence":"additional","affiliation":[{"name":"Division of Endocrinology, Erasmus Medical Centre, Rotterdam, Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cornelie D","family":"Andela","sequence":"additional","affiliation":[{"name":"Division of Endocrinology and Centre for Endocrine Tumours, Leiden University Medical Centre, Leiden, Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Margueritta","family":"Abou-Hanna","sequence":"additional","affiliation":[{"name":"HRA Pharma Rare Diseases, Ch\u00e2tillon, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"Idres","sequence":"additional","affiliation":[{"name":"HRA Pharma Rare Diseases, Ch\u00e2tillon, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Antoine","family":"Tabarin","sequence":"additional","affiliation":[{"name":"Department of Endocrinology and INSERM U862 University and CHU of Bordeaux, Pessac, France"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"416","reference":[{"key":"bib1","series-title":"Best Practice and Research: Clinical Endocrinology and Metabolism","article-title":"Cushing\u2019s syndrome: overview of clinical presentation, diagnostic tools and complications","volume":"34","author":"Barbot","year":"2020","unstructured":"Barbot MZilio MScaroni C. 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