Health-Related Quality of Life in Turner Syndrome and the Influence of Growth Hormone Therapy: A 20-Year Follow-Up

Abstract

Context The factors that affect the health-related quality of life (HRQoL) of women with Turner syndrome (TS) are controversial. Objective The aim was to describe the HRQoL of women with TS with a focus on how given GH treatment and comorbidity influence HRQoL in adulthood and to compare HRQoL of women with TS with that of women in the general population. Design Longitudinal cohort study, up to 20 years. Setting The Turner Center at the Section for Endocrinology and Department of Reproductive Medicine at Sahlgrenska University Hospital, Gothenburg, Sweden. Participants Women with TS (n = 200), age range 16 to 78 years, were included consecutively and monitored every fifth year between 1995 and 2018. Women from the World Health Organization MONItoring of trends and determinants for CArdiovascular disease project were used as reference populations. Interventions and Main Outcome Measures HRQoL was measured using the Psychological General Well-Being index and the Nottingham Health Profile. Associations with somatic variables were assessed using longitudinal linear regression models. Results HRQoL was not associated with GH treatment in TS in spite of a mean 5.7 cm taller height. HRQoL was only associated with height per se in one of 13 subscales (P < 0.01). HRQoL was negatively affected by higher age, higher age at diagnosis, and hearing impairment in TS. Women with TS reported a similar HRQoL to the reference population. Conclusions No association between previous GH treatment and HRQoL was found during the up to 20 years of follow-up in women with TS. HRQoL of women with TS and the reference population was similar.

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

“…When considering determinants for these results, we found that especially having comorbidities such as diabetes and orthopaedic complaints were related to lower HR‐QoL. This impaired quality of life was reported before, in which at least some domains of QoL were found to be decreased in women with TS . However, three studies found QoL in women with TS to be comparable to non‐TS controls, or found even better scores by women with TS on some aspects such as social and emotional functioning .…”

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

“…This impaired quality of life was reported before, in which at least some domains of QoL were found to be decreased in women with TS. 26,[30][31][32][33][34][35][36] However, three studies found QoL in women with TS to be comparable to non-TS controls, [37][38][39] or found even better scores by women with TS on some aspects such as social and emotional functioning. 38 Our study further determined in which domains Turner patients are especially experiencing difficulties and which factors contributed to their reduced mental health.…”

Deficient knowledge in adult Turner syndrome care as an incentive to found Turner centers in Germany

“…Furthermore, other tests and summary tools, transfer records, and a recommended approach for transitioning into adult practice are available on the Endocrine Society website (http://www.endocrinetransitions.org). Hence, multidisciplinary centers have already been established in the Netherlands, UK, Sweden, and in France, resulting in a better quality of the care available to women with TS including organized transition (26, 29, 31, 32, 35). Austria, like Germany, is far behind these developments (2).…”

“…Some authors also attribute the insufficient care to a lack of the necessary personal responsibility resulting from the described impairment in social skills displayed by TS patients as a contributing factor (21, 25). Multidisciplinary centers capable of managing the care after childhood are important to improve and maintain the quality of medical care in women with Turner syndrome and were established in several countries during the last decade (26, 27, 28, 29, 30, 31, 32).…”