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

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.