A value-based healthcare approach: Health-related quality of life and psychosocial functioning in women with Turner syndrome.

Autor: van den Hoven AT; Department of Cardiology, Erasmus Medical Center, Rotterdam, The Netherlands., Bons LR; Department of Cardiology, Erasmus Medical Center, Rotterdam, The Netherlands., Dykgraaf RHM; Department of Gynecology, Erasmus Medical Center, Rotterdam, The Netherlands., Dessens AB; Department of Child and Adolescent Psychiatry/Psychology, Erasmus Medical Center, University Medical Center Rotterdam, Rotterdam, The Netherlands., Pastoor H; Department of Gynecology, Erasmus Medical Center, Rotterdam, The Netherlands., de Graaff LCG; Department of Internal Medicine, Erasmus Medical Center, Rotterdam, The Netherlands., Metselaar MR; Department of Otolaryngology, Erasmus Medical Center, Rotterdam, The Netherlands., Kneppers-Swets A; Department of Orthopedics, Erasmus Medical Center, Rotterdam, The Netherlands., Kardys I; Department of Clinical Epidemiology, Erasmus Medical Center, Rotterdam, The Netherlands., Mijnarends H; Department of Cardiology, Erasmus Medical Center, Rotterdam, The Netherlands., Zweerus F; Department of Quality and Patient care, Erasmus Medical Center, Rotterdam, The Netherlands., Hazelzet JA; Department of Public Health, Erasmus Medical Center, Rotterdam, The Netherlands., Utens EMWJ; Department of Child and Adolescent Psychiatry/Psychology, Erasmus Medical Center, University Medical Center Rotterdam, Rotterdam, The Netherlands.; Research Institute of Child Development and Education, University of Amsterdam, Amsterdam, The Netherlands.; Department of Child and Adolescent Psychiatry, Academic Center for Child Psychiatry the Bascule, Academic Medical Center, Amsterdam, The Netherlands., van den Bosch AE; Department of Cardiology, Erasmus Medical Center, Rotterdam, The Netherlands., Roos-Hesselink JW; Department of Cardiology, Erasmus Medical Center, Rotterdam, The Netherlands.
Jazyk: angličtina
Zdroj: Clinical endocrinology [Clin Endocrinol (Oxf)] 2020 May; Vol. 92 (5), pp. 434-442. Date of Electronic Publication: 2020 Feb 18.
DOI: 10.1111/cen.14166
Abstrakt: Objective: As part of the value-based healthcare programme in our hospital, a set of patient-reported outcome measures was developed together with patients and implemented in the dedicated Turner Syndrome (TS) outpatient clinic. This study aims to investigate different aspects of health-related quality of life (HR-QoL) and psychosocial functioning in women with TS in order to establish new possible targets for therapy.
Design/participants: A comprehensive set of questionnaires (EQ-5D, PSS-10, CIS-20, Ferti-QoL, FSFI) was developed and used to capture different aspects of HR-QoL and psychosocial functioning in a large cohort of adult women with Turner syndrome. All consecutive women, ≥18 years, who visited the outpatient clinic of our tertiary centre were eligible for inclusion.
Results: Of the eligible 201 women who were invited to participate, 177 women (age 34 ± 12 years, mean ± SD) completed at least one of the validated questionnaires (88%). Women with TS reported a lower health-related quality of life (EQ-5D: 0.857 vs 0.892, P = .003), perceived more stress (PSS-10:14.7 vs 13.3; P = .012) and experienced increased fatigue (CIS-20: P < .001) compared to the general Dutch population. A relationship between noncardiac comorbidities (eg diabetes, orthopaedic complaints) and HR-QoL was found (R = .508).
Conclusions: We showed that TS women suffer from impaired HR-QoL, more perceived stress and increased fatigue compared to healthy controls. A relationship between noncardiac comorbidities and HR-QoL was found. Especially perceived stress and increased fatigue can be considered targets for improvement of HR-QoL in TS women.
(© 2020 The Authors. Clinical Endocrinology published by John Wiley & Sons Ltd.)
Databáze: MEDLINE
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