Quality of life burden in Cushing’s syndrome: baseline results from the PROMPT study

Objective Cushing’s syndrome (CS) is associated with marked impairment in quality of life (QoL). This analysis aimed to comprehensively describe QoL impairment in participants of the PROMPT study using two validated instruments: the CushingQoL and the Tübingen Cushing’s Disease Quality of Life Inventory (CD-25). Methods Cross-sectional analysis used baseline questionnaires from PROMPT (NCT02297945), a prospective study of metyrapone in 49 adults with confirmed endogenous CS. Item- and domain-level analyses were conducted for the CushingQoL (0-100; higher = better QoL) and CD-25 (0-100; higher = worse QoL). Subgroups: sex (15 males, 34 females) and biochemical UFC severity (31 moderate and 16 severe). Results Patients reported substantial impairment in QoL. The mean CushingQoL score was 41.2 (95%CI 35.6-46.7), with greater physical (36.8) than psychosocial (45.5) burden. The CD-25 score was 39.8 (95%CI 32.7-46.9), with bodily restrictions (48.6) and eating behaviour (44.7) most severely affected. Worry about future health (75.5%) and physical appearance (73.5%) were the most prevalent individual concerns. The two instruments were strongly inversely correlated (r= −0.81, p<0.001). Females reported clinically worse psychosocial QoL compared with males (CushingQoL psychosocial: 41.7 vs 54.2, −12.2 points; CD-25 depression: 39.5 vs 26.9, + 12.6 points), despite similar biochemical severity. No meaningful differences in overall QoL scores were observed between patients with moderate versus severe hypercortisolism. Conclusions Uncontrolled CS is associated with profound multidomain QoL impairment dominated by psychological distress, largely independent of biochemical disease severity. Women reported clinically meaningful worse psychosocial outcomes than men. Disease-specific, item-level QoL assessment may add information not captured by biochemical parameters in patients with active CS.

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Journal
Frontiers in Endocrinology
Published
2026-11-05
DOI
https://doi.org/10.3389/fendo.2026.1964012
Primary Topic
Pituitary Gland Disorders and Treatments
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article
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article

Quality of life burden in Cushing’s syndrome: baseline results from the PROMPT study

Barbara Jarząb, Massimo Terzolo, Paola Loli, Arnau Domenech et al.
Frontiers in Endocrinology
Pituitary Gland Disorders and Treatments
article

Quality of life burden in Cushing’s syndrome: baseline results from the PROMPT study

Barbara Jarząb, Massimo Terzolo, Paola Loli, Arnau Domenech, Alicja Hubalewska‐Dydejczyk, Roberta Giordano, Timo Deutschbein, Miklós Tóth, Benedetta Zampetti, Martín Reincke, Francesco Cavagnini, Emese Mezősi, Nicole Unger, Dominique M. Maiter, Myriam Bou Nader, Lynnette K. Nieman, Marco Boscaro, Ninet Sinaii, Natacha Driessens, Carmen Emanuela Georgescu, Corin Badiu, Marek Bolanowski, Felicia Alexandra Hanzu, Judit Tõke, Marcin Motyka, Ayşegül Atmaca, Carla Maria Scaroni, Albert Beckers
article en

Abstract

Objective Cushing’s syndrome (CS) is associated with marked impairment in quality of life (QoL). This analysis aimed to comprehensively describe QoL impairment in participants of the PROMPT study using two validated instruments: the CushingQoL and the Tübingen Cushing’s Disease Quality of Life Inventory (CD-25). Methods Cross-sectional analysis used baseline questionnaires from PROMPT (NCT02297945), a prospective study of metyrapone in 49 adults with confirmed endogenous CS. Item- and domain-level analyses were conducted for the CushingQoL (0-100; higher = better QoL) and CD-25 (0-100; higher = worse QoL). Subgroups: sex (15 males, 34 females) and biochemical UFC severity (31 moderate and 16 severe). Results Patients reported substantial impairment in QoL. The mean CushingQoL score was 41.2 (95%CI 35.6-46.7), with greater physical (36.8) than psychosocial (45.5) burden. The CD-25 score was 39.8 (95%CI 32.7-46.9), with bodily restrictions (48.6) and eating behaviour (44.7) most severely affected. Worry about future health (75.5%) and physical appearance (73.5%) were the most prevalent individual concerns. The two instruments were strongly inversely correlated (r= −0.81, p<0.001). Females reported clinically worse psychosocial QoL compared with males (CushingQoL psychosocial: 41.7 vs 54.2, −12.2 points; CD-25 depression: 39.5 vs 26.9, + 12.6 points), despite similar biochemical severity. No meaningful differences in overall QoL scores were observed between patients with moderate versus severe hypercortisolism. Conclusions Uncontrolled CS is associated with profound multidomain QoL impairment dominated by psychological distress, largely independent of biochemical disease severity. Women reported clinically meaningful worse psychosocial outcomes than men. Disease-specific, item-level QoL assessment may add information not captured by biochemical parameters in patients with active CS.

Frontiers in EndocrinologyVol. 17
Semmelweis University (HU), Jagiellonian University (PL), National Institutes of Health (US), Université Libre de Bruxelles (BE), Carol Davila University of Medicine and Pharmacy (RO), Iuliu Hațieganu University of Medicine and Pharmacy (RO), University of Wrocław (PL), Ondokuz Mayıs University (TR), University of Würzburg (DE), Erasmus Hospital (BE), LMU Klinikum (DE), Wroclaw Medical University (PL), National Institute of Diabetes and Digestive and Kidney Diseases (US), Azienda Socio Sanitaria Territoriale Grande Ospedale Metropolitano Niguarda (IT), Hospital Clínic de Barcelona (ES), Institutul Național de Endocrinologie C.I. Parhon (RO), Essen University Hospital (DE), Universitätsklinikum Würzburg (DE), Department of Medical Sciences (BY), IRCCS Istituto Auxologico Italiano (IT), Esteve Química (Spain) (ES), Medicover (DE), The Maria Sklodowska-Curie National Research Institute of Oncology (PL), National Institutes of Health Clinical Center (US), Ospedale San Luigi Gonzaga (IT), Esteve (Spain) (ES), University of Turin (IT), Universitat de Barcelona (ES), Ludwig-Maximilians-Universität München (DE), UCLouvain (BE)
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Pituitary Gland Disorders and Treatments
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