1. A value-based healthcare approach
- Author
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Jan A. Hazelzet, Hester Mijnarends, Laura C. G. de Graaff, Isabella Kardys, Allard T. van den Hoven, Elisabeth M. W. J. Utens, Arianne B. Dessens, Mick Metselaar, Jolien W. Roos-Hesselink, Ramon H. M. Dykgraaf, Hester Pastoor, Lidia R. Bons, Annemiek Kneppers‐ Swets, Frank Zweerus, Annemien E. van den Bosch, Child Psychiatry, Developmental Psychopathology (RICDE, FMG), Cardiology, Obstetrics & Gynecology, Child and Adolescent Psychiatry / Psychology, Internal Medicine, Otorhinolaryngology and Head and Neck Surgery, Orthopedics and Sports Medicine, Epidemiology, and Public Health
- Subjects
Adult ,medicine.medical_specialty ,Endocrinology, Diabetes and Metabolism ,Turner syndrome ,physiological-fatigue ,030209 endocrinology & metabolism ,hypogonadism‐stress ,03 medical and health sciences ,0302 clinical medicine ,Endocrinology ,Quality of life ,Internal medicine ,Diabetes mellitus ,Surveys and Questionnaires ,Health care ,medicine ,Outpatient clinic ,Humans ,patient‐reported outcome measures ,physiological‐fatigue ,patient-reported outcome measures ,Health related quality of life ,business.industry ,Reproduction ,hypogonadism-stress ,Infant, Newborn ,Original Articles ,medicine.disease ,congenital heart defects ,Psychosocial Functioning ,quality of life ,030220 oncology & carcinogenesis ,Value based healthcare ,Physical therapy ,Female ,Original Article ,business ,Psychosocial ,Delivery of Health Care - Abstract
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.
- Published
- 2020
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