Objective: Young women with Turner syndrome are known to be especially at risk for lost of follow-up. Recent literature indicates that there are disparities regarding transition readiness between different chronic conditions. To assess differences in transition readiness might be crucial for identifying special needs in specific patient cohorts when preparing for transfer to adult care. Our hypothesis was, that young women with Turner syndrome would score lower than patients without a disorder-specific neurocognitive phenotype, like girls and young women diagnosed either with type 1 diabetes or with juvenile idiopathic.
Method: Patients (n=54, 27 patients with TS, 27 controls) aged 14 to 23 were recruited in a multicenter study involving 3 specialized pediatric Endocrine outpatient clinics.
We applied the recently cross-culturally adapted German version of the Transition Readiness Assessment Questionnaire (in publication, under review) to assess transition readiness in girls and young women with Turner syndrome (N=27, group TS) compared to age-matched controls.
Demographic characteristics (age, sex, first language, patient´s education) were included. We gathered data on frequency of help needed to answer the questionnaire, time needed to complete the questionnaire, and duration of the individual interview. We used descriptive statistics and conducted non-parametric Wilcoxon signed-rank test.
Results: Significant differences for transition readiness scores were found between the two study groups. Subscale 1 "autonomy" of the Transition Readiness Assessment Questionnaire showed lower scores for patients with Turner syndrome. No significant difference could be found for subscale 2 "Health Literacy" and for subscale 3 "adherence". On a single item level, two items from subscale 1 regarding appointment arrangements and one item from subscale 2 concerning knowledge about health insurance showed significant lower scores for girls with Turner syndrome. Patients with Turner syndrome needed significantly more help and more time to fill in and complete the questionnaire. Significantly longer duration of consultations for patients with Turner syndrome was recorded.
Conclusion: Lower scores for patients with Turner syndrome compared to a control group comprising patients with type 1 diabetes and juvenile idiopathic arthritis. Thus, special attention should be given to young women with Turner syndrome in the preparation for the transitional phase. By incorporating the assessment of transition readiness within the clinical setting, specialists will find it easier to identify underdeveloped skills and knowledge gaps in their patients. As patients with Turner syndrome needed significantly more time in completing the survey, sufficient time for consultation should be scheduled.
19 - 21 Sep 2019
European Society for Paediatric Endocrinology