International Guideline Adherence in Girls with Turner Syndrome: Multiple Subspecialty Clinics Versus Coordinated Multidisciplinary Clinic

Abstract

Objective: To evaluate the 2016 Cincinnati International Turner syndrome (TS) consensus guideline adherence within our pediatric tertiary referral center and determine if patients managed in our single-day, coordinated multidisciplinary clinic (MDC) format showed superior adherence rates when compared with those managed outside our MDC format.

Methods: We retrospectively reviewed the charts of patients with TS followed at our center from January 1, 2018, to April 30, 2020. The individual and overall adherence rates of 9 age-appropriate screening recommendations were evaluated along with rates of TS comorbidities within our cohort.

Results: A total of 111 girls met the study criteria. Sixty-eight were managed in the MDC and 43 were managed outside the MDC. Only 42% of all the girls met all 9 evaluated age-appropriate screening recommendations, of 47 girls, 33 (70%) were managed in MDC compared with 14 (30%) who were managed in the non-MDC. Girls managed in the MDC had higher screening adherence rates versus non-MDC girls for 7 of the 9 evaluated screenings with especially large differences noted for thyroid stimulating hormone (95% vs 78%, P = .034), auditory evaluation (97% vs 65%, P < .001), and HgA1c levels (82% vs 54%, P = .014).

Conclusion: Girls managed in the MDC format showed higher rates of screening guideline adherence, both overall and with multiple specific screening tests, than those managed outside the MDC format. Overall guideline adherence remained low (42%), highlighting the need for continued optimization and improvement in guideline adherence in this unique subset of the population.

Keywords: Turner syndrome; pediatrics.