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

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.