Determinants of low health-related quality of life in patients with myelodysplastic syndromes: EUMDS Registry study

Author:

Stojkov Igor1ORCID,Conrads-Frank Annette1,Rochau Ursula1,Arvandi Marjan1,Koinig Karin A.2ORCID,Schomaker Michael13ORCID,Mittelman Moshe4,Fenaux Pierre5,Bowen David6,Sanz Guillermo F.78ORCID,Malcovati Luca9ORCID,Langemeijer Saskia10,Germing Ulrich11,Madry Krzysztof12,Guerci-Bresler Agnès13,Culligan Dominic J.14,Kotsianidis Ioannis15,Sanhes Laurence16,Mills Juliet17,Puntscher Sibylle1,Schmid Daniela18,van Marrewijk Corine10ORCID,Smith Alexandra19ORCID,Efficace Fabio20,de Witte Theo21,Stauder Reinhard2ORCID,Siebert Uwe1222324ORCID

Affiliation:

1. 1Institute of Public Health, Medical Decision Making and Health Technology Assessment, Department of Public Health, Health Services Research and Health Technology Assessment, UMIT - University for Health Sciences, Medical Informatics and Technology, Hall in Tirol, Austria

2. 2Department of Internal Medicine V (Hematology and Oncology), Innsbruck Medical University, Innsbruck, Austria

3. 3Centre for Infectious Disease Epidemiology and Research, University of Cape Town, Cape Town, South Africa

4. 4Department of Medicine A, Tel Aviv Sourasky (Ichilov) Medical Center and Sackler Medical Faculty, Tel Aviv University, Tel Aviv, Israel

5. 5Service d’Hématologie Séniors, Hôpital Saint-Louis, Assistance Publique des Hôpitaux de Paris and Université Paris 7, Paris, France

6. 6St. James’s Institute of Oncology, Leeds Teaching Hospitals, Leeds, United Kingdom

7. 7Department of Haematology, Hospital Universitario y Politécnico La Fe, Valencia, Spain

8. 8Centro de Investigación Biomédica en Red de Cáncer, CIBERONC, Instituto de Salud Carlos III, Madrid, Spain

9. 9Department of Hematology Oncology, Fondazione IRCCS Policlinico San Matteo, University of Pavia, Pavia, Italy

10. 10Department of Hematology, Radboud University Medical Center, Nijmegen, The Netherlands

11. 11Department of Haematology, Oncology and Clinical Immunology, Universitätsklinik Düsseldorf, Düsseldorf, Germany

12. 12Department of Haematology, Oncology and Internal Medicine, Warszawa Medical University, Warsaw, Poland

13. 13Service d'Hématologie Clinique, Centre Hospitalier Universitaire Brabois, Nancy, France

14. 14Department of Haematology, Aberdeen Royal Infirmary, Aberdeen, United Kingdom

15. 15Department of Hematology, Democritus University of Thrace, University Hospital of Alexandroupolis, Alexandroupolis, Greece

16. 16Haematology Department of Perpignan, Saint Jean Hospital, Perpignan, France

17. 17Worcestershire Acute Hospitals NHS Trust and University Hospitals Birmingham NHS Foundation Trust, Worcester, United Kingdom

18. 18Division for Quantitative Methods in Public Health and Health Services Research, Department of Public Health, Health Services Research and Health Technology Assessment, UMIT - University for Health Sciences, Medical Informatics and Technology, Hall in Tirol, Austria

19. 19Epidemiology and Cancer Statistics Group, Department of Health Sciences, University of York, York, United Kingdom

20. 20Health Outcomes Research Unit, Gruppo Italiano Malattie Ematologiche dell’Adulto (GIMEMA), Rome, Italy

21. 21Department of Tumor Immunology - Nijmegen Center for Molecular Life Sciences, Radboud University Medical Center, Nijmegen, The Netherlands

22. 22Division of Health Technology Assessment, ONCOTYROL - Center for Personalized Cancer Medicine, Innsbruck, Austria

23. 23Center for Health Decision Science, Departments of Epidemiology and Health Policy & Management, Harvard Chan School of Public Health, Boston, MA

24. 24Institute for Technology Assessment and Department of Radiology, Massachusetts General Hospital, Harvard Medical School, Boston, MA

Abstract

Abstract Patients with myelodysplastic syndromes (MDS) frequently experience a significant symptom burden, which reduces health-related quality of life (HRQoL). We aimed to identify determinants of low HRQoL in patients recently diagnosed with MDS, for guiding early intervention strategies. We evaluated longitudinal data in 2205 patients with MDS during their first year after diagnosis. Median values of EQ-5D 3-level (EQ-5D-3L) index (0.78) and visual analog scale (VAS) score (0.70) were used as thresholds for low HRQoL. In addition, the 5 dimensions of EQ-5D-3L were analyzed for impairments (any level vs “no problem” category). After multiple imputation of missing values, we used generalized estimating equations (GEE) to estimate odds ratios (OR) for univariable determinant screening (P < .15), and to subsequently derive multivariable models for low HRQoL with 95% confidence intervals (CI). Multivariable GEE analysis showed the following independent determinants (OR, 95% CI) for low EQ-5D index: increased age (60-75 years: 1.33, 1.01-1.75; >75: 1.84, 1.39-2.45), female sex (1.70, 1.43-2.03), high serum ferritin level (≥1000 vs ≤300 μg/L: 1.41, 1.06-1.87), comorbidity burden (per unit: 1.11, 1.02-1.20), and reduced Karnofsky performance status (KPS, per 10 units: 0.62, 0.58-0.67). For low VAS score, additional determinants were transfusion dependence (1.53, 1.03-2.29), low hemoglobin <10 g/dL (1.34, 1.12-1.61), and high body mass index (≥30 vs 23-29.9 kg/m2: 1.26, 1.02-1.57). Sex, KPS, comorbidity burden, hemoglobin count, and transfusion burden were determinants for all EQ-5D dimensions. Low HRQoL is determined by multiple factors, which should be considered in the management and shared decision making of patients with MDS. This trial was registered at www.clinicaltrials.gov as #NCT00600860.

Publisher

American Society of Hematology

Subject

Hematology

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