The transition to independence and adult care for women with Turner syndrome: Current status and priorities of 1338 women and parents.

ABSTRACT: Transitioning to adult health care and functioning is crucial for youth and young adults with special health care needs, such as those with Turner syndrome (TS). The International Turner Syndrome Consensus Group developed clinical practice guidelines to improve this transition. This study sought to evaluate how effectively they have been implemented and whether they align with the priorities of women with TS and families of girls and women with TS. A web-based survey was offered to those affiliated with major TS support organizations, with 1338 successfully responding (n = 543 women [≥18 years]; n = 232 parents of a woman [≥18 years]; and n = 563 parents of a girl with TS [<18 years]). Findings demonstrated that while most women transitioned to adult primary care providers, follow-up with

SUBMITTER: Streur CS 

PROVIDER: S-EPMC8758527 | biostudies-literature | 2022 Feb

REPOSITORIES: biostudies-literature