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 key specialists was lacking. Women and families prioritized flexibility in appointments and designating one provider to oversee all their TS‐related care. They identified health care coverage as a barrier to receiving care. The transition process to adult care and independence commonly occurred after girls become legal adults. Together, these findings serve to inform strategies to improve the delivery of transitional care for girls and women with TS.

Transition from pediatric to adult care in patients with Turner syndrome in Italy: a consensus statement by the TRAMITI project

“…Early disclosure of TS diagnosis to parents and, subsequently, to the patient around the age of 11–13 years, promotes self-reliance and healthcare autonomy [ 5 , 13 ]. Developmental age should take precedence over chronological age in determining communication timing (Statement A2) [ 14 ].…”

“…Telemedicine can be helpful in enhancing the sharing of information between patients and clinical staff, thus bolstering the effectiveness of consultations and adherence to follow-up appointments (Statement A7). Incorporating telemedicine platforms into transition strategies offers the potential for greater flexibility in scheduling visits and mitigating social and logistical hurdles for both patients and parents [ 13 , 23 , 24 ]. However, it is important to recognize that telemedicine should complement, rather than supplant, in-person visits.…”

“…Both pediatric and adult endocrinologists are regarded as the driving forces within the multidisciplinary care team [ 13 ]; the first transition visit should be managed by both specialists (Statement A10).…”

Facilitating the transition from paediatric to adult care in endocrinology: a focus on growth disorders

“…Guidelines and recommendations to facilitate the transition of AYAs with Turner syndrome have been updated in the last 2–3 years [31,33,34,38], but studies suggest that women with Turner syndrome continue to be unprepared for transition [39,40]. Low confidence regarding independence in self-management is one reported factor [41 ▪ ]. Patel et al [39] reported that increased patient age, higher level of education, more life skills, and greater Turner syndrome knowledge, confidence and social/emotional skills were associated with higher transition readiness.…”