Cited by 79Adolescent and Pediatric HealthcareGenetic and Clinical Aspects of Sex Determination and Chromosomal AbnormalitiesSexual Differentiation and Disorders

Determinants of medical care for young women with Turner syndrome

Devernay, Marie, Ecosse, Emmanuel, Coste, Joël, Carel, Jean-Claude·2009·The Journal of Clinical Endocrinology & Metabolism

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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Crossref · 10.1210/jc.2009-0495

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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
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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