Determinants of Medical Care for Young Women with Turner Syndrome

Abstract

Context: Turner syndrome is associated with reduced life expectancy. Lifelong follow-up is strongly recommended, but follow-up during the transition between pediatric and adult care has been little evaluated. Objective: Our objective was to evaluate the medical follow-up of a population-based cohort of young adult patients. Design, Setting, and Patients: A questionnaire study was conducted with a national cohort of 568 women, aged 22.6 ± 2.6 yr (range, 18.3–31.2), a mean of 6 yr after stopping GH treatment (StaTur cohort). Main Outcome Measures: We assessed the proportion of patients with adequate follow-up at seven medical assessments over 4 yr and its determinants. Results: Most participants were followed by gynecologists or general practitioners. Medical assessments were performed in 16% (audiometry) to 68% (lipid level determinations) of participants, with little consistency in individual patients. Only 20 of 568 patients (3.5%) underwent all assessments in the 4-yr period. Multivariate analysis identified the type of physician as the only factor consistently associated with follow-up, which was more adequate with endocrinologists than with other physicians. Other variables associated with at least one adequate follow-up assessment were paternal socioeconomic class, education level, number of Turner syndrome disease components, size of the medical center following the patient in childhood, and physical health dimensions of Short Form 36 questionnaire. Conclusions: By contrast with the intensive medical follow-up in childhood, follow-up was grossly inadequate during the transition phase. During this phase, patients should be sent to physicians specializing in Turner syndrome and particular attention should be paid to patients with lower levels of education and from families of low socioeconomic status. This study finds adherence to recommended follow-up for young adult women with Turner syndrome is incomplete even when there is good access to care.