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Peer-reviewedCC BY 4.0Frontiers in Endocrinology

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

  • Carla Scaroni1
  • Lynnette K. Nieman2
  • Marco Boscaro1
  • Timo Deutschbein3,4
  • Emese Mezôsi5
  • Natacha Driessens6
  • Carmen E. Georgescu7
  • Marcin Motyka8
  • Alicja Hubalewska-Dydejczyk9
  • Barbara Jarzab10
  • Dominique Maiter11
  • Martin Reincke12
16 more authors
  • Paola Loli13
  • Benedetta Zampetti14
  • Aysegul Atmaca15
  • Corin Badiu16
  • Albert Beckers17
  • Marek Bolanowski18
  • Francesco Cavagnini19
  • Nicole Unger20
  • Roberta Giordano21
  • Felicia Alexandra Hanzu22
  • Massimo Terzolo23
  • Arnau Domenech24
  • Myriam Bou Nader24
  • Ninet Sinaii25
  • Judit Tőke26
  • Miklós Tóth26
26 affiliations
  1. 1Endocrinology Unit, Department of Medicine, Hospital-University
  2. 2National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health
  3. 3Division of Endocrinology and Diabetes, Department of Internal Medicine I, University Hospital, University of Würzburg
  4. 4Medicover Oldenburg MVZ
  5. 5Department of Internal Medicine, University Medical School
  6. 6Hôpital Universitaire de Bruxelles Hôpital Erasme, Université Libre de Bruxelles
  7. 7Department of Endocrinology, Iuliu Hatieganu University of Medicine and Pharmacy and Cluj County Emergency Hospital
  8. 8Department of Endocrinology, Oncologic Endocrinology and Nuclear Medicine, University Hospital in Krakow
  9. 9Endocrinology Department, Jagiellonian University Medical College
  10. 10Department of Nuclear Medicine and Endocrine Oncology, Maria Sklodowska-Curie National Research Institute of Oncology
  11. 11Department of Endocrinology and Nutrition, UCLouvain Hospital Saint-Luc
  12. 12Department of Medicine 4, Klinikum der Universität, Ludwig-Maximilians-Universität München
  13. 13Endocrinology Department, Clinica San Carlo, Paderno Dugnano
  14. 14Endocrinology Unit, Azienda Socio-Sanitaria Territoriale (ASST) Grande Ospedale Metropolitano Niguarda
  15. 15Division of Endocrinology and Metabolism, Department of Internal Medicine, Ondokuz Mayis University
  16. 16Department of Endocrinology IV, “C.I Parhon”, National Institute of Endocrinology, “D. Davila” University of Medicine and Pharmacy
  17. 17Endocrinology Department, University Hospital
  18. 18Department of Endocrinology and Internal Medicine, Medical University Wroclaw
  19. 19Endocrinology Clinic, Istituto Auxologico Italiano
  20. 20Department of Endocrinology, Diabetes and Metabolism, University Hospital Essen
  21. 21Department of Biological and Clinical Sciences, University of Turin
  22. 22Endocrinology Department, Hospital Clinic, University of Barcelona
  23. 23Department of Clinical and Biological Sciences, Internal Medicine, San Luigi Gonzaga Hospital
  24. 24Esteve S.A.
  25. 25Biostatistics and Clinical Epidemiology Service, National Institutes of Health Clinical Center, National Institute of Health
  26. 26Department of Internal Medicine and Oncology, Semmelweis University
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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.

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Cite

BibTeXRIS
BibTeX
@article{scaroni2026quality,
  title = {{Quality of life burden in Cushing’s syndrome: baseline results from the PROMPT study}},
  author = {Carla Scaroni and Lynnette K. Nieman and Marco Boscaro and Timo Deutschbein and Emese Mezôsi and Natacha Driessens and Carmen E. Georgescu and Marcin Motyka and Alicja Hubalewska-Dydejczyk and Barbara Jarzab and Dominique Maiter and Martin Reincke and Paola Loli and Benedetta Zampetti and Aysegul Atmaca and Corin Badiu and Albert Beckers and Marek Bolanowski and Francesco Cavagnini and Nicole Unger and Roberta Giordano and Felicia Alexandra Hanzu and Massimo Terzolo and Arnau Domenech and Myriam Bou Nader and Ninet Sinaii and Judit Tőke and Miklós Tóth},
  journal = {Frontiers in Endocrinology},
  year = {2026},
  month = nov,
  doi = {10.3389/fendo.2026.1964012},
  url = {https://www.frontiersin.org/articles/10.3389/fendo.2026.1964012/full},
  note = {CC BY 4.0},
}
RIS
TY  - JOUR
TI  - Quality of life burden in Cushing’s syndrome: baseline results from the PROMPT study
AU  - Carla Scaroni
AU  - Lynnette K. Nieman
AU  - Marco Boscaro
AU  - Timo Deutschbein
AU  - Emese Mezôsi
AU  - Natacha Driessens
AU  - Carmen E. Georgescu
AU  - Marcin Motyka
AU  - Alicja Hubalewska-Dydejczyk
AU  - Barbara Jarzab
AU  - Dominique Maiter
AU  - Martin Reincke
AU  - Paola Loli
AU  - Benedetta Zampetti
AU  - Aysegul Atmaca
AU  - Corin Badiu
AU  - Albert Beckers
AU  - Marek Bolanowski
AU  - Francesco Cavagnini
AU  - Nicole Unger
AU  - Roberta Giordano
AU  - Felicia Alexandra Hanzu
AU  - Massimo Terzolo
AU  - Arnau Domenech
AU  - Myriam Bou Nader
AU  - Ninet Sinaii
AU  - Judit Tőke
AU  - Miklós Tóth
PY  - 2026
DA  - 2026/11/05
JO  - Frontiers in Endocrinology
DO  - 10.3389/fendo.2026.1964012
UR  - https://www.frontiersin.org/articles/10.3389/fendo.2026.1964012/full
AB  - 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.
SN  - 1664-2392
ER  -