ArticleClinical endocrinology2020
A value-based healthcare approach: Health-related quality of life and psychosocial functioning in women with Turner syndrome.
Article in Clinical endocrinology, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 2 of them syntheses that pooled it.
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Who cites it
18 citing papers in PubMed, 2 syntheses or guidelines pooled it, 35 citations in OpenAlex.
- How Does Turner Syndrome Affect Quality of Life? A Systematic Review.Medicina (Kaunas, Lithuania) · 2025Pooled it
- Clinical practice guidelines for the care of girls and women with Turner syndrome.European journal of endocrinology · 2024Guideline
- SEXATURN: sexual function of patients with Turner syndrome compared to that of women with premature ovarian insufficiency.Sexual medicine · 2026Article
- The Influence of X Chromosome Parent-of-Origin on Glycemia in Individuals with Turner Syndrome.Hormone research in paediatrics · 2026Article
- Approach to the Patient With Turner Syndrome.The Journal of clinical endocrinology and metabolism · 2025Review
- Global burden and between-country inequalities in Turner syndrome from 1990 to 2021.Acta obstetricia et gynecologica Scandinavica · 2025Article
- Exploring the interplay of karyotype, hormones, sexuality, and body image perception in individuals with Turner syndrome.Journal of endocrinological investigation · 2025Article
- A decade of change towards Value-Based Health Care at a Dutch University Hospital: a complexity-informed process study.Health research policy and systems · 2024Article
- Associations Between Fatigue and Endocrine and Non-endocrine Health Problems in Turner Syndrome: Cohort Study and Review.The Journal of clinical endocrinology and metabolism · 2023Review
- The quality of life and body image disturbances of Turner syndrome patients in Malaysia: a cross-sectional study.BMC women's health · 2023Article
- Work participation in adults with rare genetic diseases - a scoping review.BMC public health · 2023Article
- Neuropsychological and mental health concerns in a multicenter clinical sample of youth with turner syndrome.American journal of medical genetics. Part A · 2023Article
- Anthropometry and physical appearance can be associated with quality of life in Brazilian women with Turner syndrome.Archives of endocrinology and metabolism · 2023Article
- Hyperglycemia in Turner syndrome: Impact, mechanisms, and areas for future research.Frontiers in endocrinology · 2023Review
- Turner syndrome: French National Diagnosis and Care Protocol (NDCP; National Diagnosis and Care Protocol).Orphanet journal of rare diseases · 2022Article
- The implementation of value-based healthcare: a scoping review.BMC health services research · 2022Article
- Socioeconomic status in patients with Turner syndrome.Comprehensive psychoneuroendocrinology · 2021Article
- A value-based healthcare approach: Health-related quality of life and psychosocial functioning in women with Turner syndrome.Clinical endocrinology · 2020Article
Corrections and comments
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Authors and funding
15 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveAs 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/
participantsA 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.
resultsOf 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).
conclusionsWe 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.
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