The transition to independence and adult care for women with Turner syndrome: current status and priorities of 1338 women and parents
Open accessAbstract
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.
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In a recent national survey in the United States, more than half of adult women with TS were not seeing a gynecologist.
“A recent national survey in the United States showed that endocrinologists and cardiologists were the most frequently visited providers among adult women with TS, yet almost one-third stated they were not seeing an endocrinologist or cardiologist, more than half were not seeing a gynecologist, and less than a quarter were seeing a psychosocial provider.550”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [550]
In a recent national survey in the United States, less than a quarter of adult women with TS were seeing a psychosocial provider.
“A recent national survey in the United States showed that endocrinologists and cardiologists were the most frequently visited providers among adult women with TS, yet almost one-third stated they were not seeing an endocrinologist or cardiologist, more than half were not seeing a gynecologist, and less than a quarter were seeing a psychosocial provider.550”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [550]
Transition readiness and/or success in individuals with TS seems to differ from other chronic conditions, with distinct requirements including individualization of transition timing and a longer period of caregiver support may be necessary.
“Transition readiness and/or success in individuals with TS seems to differ from other chronic conditions, with distinct requirements including, but not limited to, individualization of transition timing, and a longer period of caregiver support may be necessary.550”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [550]
In a recent national survey in the United States, almost one-third of adult women with TS stated they were not seeing an endocrinologist or cardiologist.
“A recent national survey in the United States showed that endocrinologists and cardiologists were the most frequently visited providers among adult women with TS, yet almost one-third stated they were not seeing an endocrinologist or cardiologist, more than half were not seeing a gynecologist, and less than a quarter were seeing a psychosocial provider.550”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [550]
A survey showed most women with TS 18-25 years of age still relied on their parents for both care and finances, though independence increased with age.
“Indeed, a survey showed most women with TS 18-25 years of age still relied on their parents for both care and finances, though independence increased with age.550”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [550]
In a recent national survey in the United States, endocrinologists and cardiologists were the most frequently visited providers among adult women with TS.
“A recent national survey in the United States showed that endocrinologists and cardiologists were the most frequently visited providers among adult women with TS, yet almost one-third stated they were not seeing an endocrinologist or cardiologist, more than half were not seeing a gynecologist, and less than a quarter were seeing a psychosocial provider.550”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [550]
Transitioning care to an adult TS team may not be feasible in many centers and regions due to lack of access to specialists who have knowledge and training in TS care and/or inadequate funding to support streamlined transition processes and resources.
“Transitioning care to an adult TS team may not be feasible in many centers and regions due to lack of access to specialists who have knowledge and training in TS care and/or inadequate funding to support streamlined transition processes and resources.532,548,550,552”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [550]
A survey study showed adult women with TS prioritized flexibility in scheduling, followed by having one provider overseeing all aspects of care.
“A survey study regarding priorities of adult women with TS showed that they prioritized flexibility in scheduling, followed by having one provider overseeing all aspects of care.550”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [550]
Studies show that few individuals with TS report following with a psychosocial provider.
“Psychosocial counseling and support are critical to optimize QoL during the healthcare transition, though studies show that few individuals with TS report following with a psychosocial provider.550”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [550]
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Clinical practice guidelines for the care of girls and women with Turner syndrome.
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- Authors
- Streur, C. S., Floody, E. A., Lapham, Z. K., & Sandberg, D. E.
- Affiliations
- University of Michigan (US)
- Emory University (US)
- Corresponding author
- Streur, Courtney S.
- Venue
- American Journal of Medical Genetics Part A
- Publisher
- Wiley
- Published
- 2021-11-13
- Volume
- 188
- Issue
- 2
- Pages
- 400-413
- ISSN
- 1552-4825 (ISSN-L)
- 1552-4833
- PMC
- PMC8758527
- OpenAlex
- W3214132656
- Cited by
- 6
- References
- 25
- Citations by year
- 2025: 2 · 2024: 3 · 2022: 1
- FWCI
- 1.24
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- American Journal of Medical Genetics Part A (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Deep Blue (University of Michigan) (submittedVersion)
- Funders
- Eunice Kennedy Shriver National Institute of Child Health and Human Development (HD093450)
- National Institute of Diabetes and Digestive and Kidney Diseases (5K12DK111011‐04)
- Topics
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Genetic and Clinical Aspects of Sex Determination and Chromosomal Abnormalities
- Social Sciences › Psychology › Social Psychology › LGBTQ Health, Identity, and Policy
- Keywords
- Turner syndrome, transition to adult care, adult primary care, health care coverage, care coordination
- MeSH terms
- Adolescent, Delivery of Health Care, Female, Humans, Parents, Surveys and Questionnaires, Turner Syndrome, Young Adult
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