TY - JOUR
T1 - A value-based healthcare approach
T2 - Health-related quality of life and psychosocial functioning in women with Turner syndrome
AU - van den Hoven, A.T.
AU - Bons, L.R.
AU - Dykgraaf, R.H.M.
AU - Dessens, A.B.
AU - Pastoor, H.
AU - de Graaff, L.C.G.
AU - Metselaar, M.R.
AU - Kneppers-Swets, A.
AU - Kardys, I.
AU - Mijnarends, H.
AU - Zweerus, F.
AU - Hazelzet, J.A.
AU - Utens, E.M.W.J.
AU - van den Bosch, A.E.
AU - Roos-Hesselink, J.W.
N1 - With supplementary files.
PY - 2020/5/1
Y1 - 2020/5/1
N2 - 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.
AB - 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.
KW - Turner syndrome
KW - congenital heart defects
KW - hypogonadism-stress
KW - patient-reported outcome measures
KW - physiological-fatigue
KW - quality of life
UR - https://pure.uva.nl/ws/files/55215537/cen14166_sup_0007_appendixs1.docx
UR - https://pure.uva.nl/ws/files/55215539/cen14166_sup_0006_tables1.docx
UR - http://www.scopus.com/inward/record.url?scp=85079715442&partnerID=8YFLogxK
U2 - https://doi.org/10.1111/cen.14166
DO - https://doi.org/10.1111/cen.14166
M3 - Article
C2 - 32003479
SN - 0300-0664
VL - 92
SP - 434
EP - 442
JO - Clinical endocrinology
JF - Clinical endocrinology
IS - 5
ER -