Determinants of medical care for young women with Turner syndrome
Abstract
CONTEXT: Turner syndrome is associated with reduced life expectancy. Lifelong follow-up is strongly recommended, but follow-up during the transition between pediatric and adult care has been little evaluated. OBJECTIVE: Our objective was to evaluate the medical follow-up of a population-based cohort of young adult patients. DESIGN, SETTING, AND PATIENTS: A questionnaire study was conducted with a national cohort of 568 women, aged 22.6 +/- 2.6 yr (range, 18.3-31.2), a mean of 6 yr after stopping GH treatment (StaTur cohort). MAIN OUTCOME MEASURES: We assessed the proportion of patients with adequate follow-up at seven medical assessments over 4 yr and its determinants. RESULTS: Most participants were followed by gynecologists or general practitioners. Medical assessments were performed in 16% (audiometry) to 68% (lipid level determinations) of participants, with little consistency in individual patients. Only 20 of 568 patients (3.5%) underwent all assessments in the 4-yr period. Multivariate analysis identified the type of physician as the only factor consistently associated with follow-up, which was more adequate with endocrinologists than with other physicians. Other variables associated with at least one adequate follow-up assessment were paternal socioeconomic class, education level, number of Turner syndrome disease components, size of the medical center following the patient in childhood, and physical health dimensions of Short Form 36 questionnaire. CONCLUSIONS: By contrast with the intensive medical follow-up in childhood, follow-up was grossly inadequate during the transition phase. During this phase, patients should be sent to physicians specializing in Turner syndrome and particular attention should be paid to patients with lower levels of education and from families of low socioeconomic status.
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Only 4% of adult women with TS undergo all recommended routine health care assessments.
“Notably, only 4% of adult women with TS undergo all recommended routine health care assessments.555”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [555]
There is a paucity of specialized adult providers with experience caring for individuals with TS.
“Additionally, there is a paucity of specialized adult providers with experience caring for individuals with TS, and quality of care and detection of comorbidities improves with adequate adult care.334,424,555,556”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [555]
Quality of care and detection of comorbidities improves with adequate adult care.
“Additionally, there is a paucity of specialized adult providers with experience caring for individuals with TS, and quality of care and detection of comorbidities improves with adequate adult care.334,424,555,556”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [555]
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Dörr, H., Bettendorf, M., Binder, G., Brämswig, J., Hauffa, B. P., Holterhus, P., Mohnike, K. L., Schmidt, H., Stalla, G. K., Wabitsch, M., et al. (2019) · DMW - Deutsche Medizinische Wochenschrift · doi:10.1055/a-0841-9918 · Cited by 3 · see citing works
Care of adult women with Turner syndrome: the state of affairs in Germany
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Transitional Care in Endocrinology
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Medizinische Betreuung von jungen Frauen mit Ullrich-Turner-Syndrom in Deutschland
Dörr, H., Bettendorf, M., Binder, G., Brämswig, J., Hauffa, B. P., Holterhus, P., Mohnike, K. L., Schmidt, H., Stalla, G. K., Wabitsch, M., et al. (2019) · DMW - Deutsche Medizinische Wochenschrift · doi:10.1055/a-0923-4191 · Cited by 2 · see citing works
Turner syndrome: skin, liver, eyes, dental and ENT evaluation should be improved
Lam, J., Stoppa‐Vaucher, S., Αντωνίου, Μ., Bouthors, T., Arana, I. L. R., Sekarski, N., Rutz, T., Fries, S., Binz, P., Niel, F., et al. (2023) · Frontiers in Endocrinology · doi:10.3389/fendo.2023.1190670 · Cited by 3 · see citing works
An interprofessional clinic for adults with Turner syndrome: the patient perspective
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Does having Turner syndrome affect quality of life in Brazilian women compared to common population?
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Turner Syndrome: Primary Amenorrhea from Adolescence to Aging
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Jenseits von Hormonen und Wachstum – psychosoziale Hürden bei Turner-Syndrom
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Transitioning Youth with Intellectual and Developmental Disabilities
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Transition Considerations for Turner Syndrome
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- Authors
- Devernay, M., Ecosse, E., Coste, J., & Carel, J.-C.
- Affiliations
- Inserm (FR)
- Department of Biostatistics (E.E., J.C.), Groupe hospitalier Cochin-Saint Vincent de Paul and University Paris Descartes, 75014 Paris, France
- Corresponding author
- Carel, Jean-Claude
- Venue
- The Journal of Clinical Endocrinology & Metabolism
- Publisher
- The Endocrine Society
- Published
- 2009-09-01
- Volume
- 94
- Issue
- 9
- Pages
- 3408-3413
- ISSN
- 0021-972X (ISSN-L)
- 1945-7197
- OpenAlex
- W2121460570
- Cited by
- 79
- References
- 31
- Citations by year
- 2026: 1 · 2025: 4 · 2024: 4 · 2023: 3 · 2022: 3 · 2021: 4 · 2020: 4 · 2019: 12 · 2018: 5 · 2017: 6 · 2016: 3 · 2015: 6 · 2014: 3 · 2013: 8 · 2012: 4
- FWCI
- 11.83
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- The Journal of Clinical Endocrinology & Metabolism (publishedVersion)
- PubMed (publishedVersion)
- 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
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Molecular Biology › Sexual Differentiation and Disorders
- Keywords
- Turner syndrome, clinical follow-up, transition from pediatric to adult care, young adult women, audiometry, lipid screening, socioeconomic status, parental education, health-related quality of life
- MeSH terms
- Adolescent, Adult, Female, Follow-Up Studies, Humans, Prospective Studies, Turner Syndrome, Multivariate Analysis, Human Growth Hormone
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