title: Quality of medical follow-up of young women with Turner syndrome treated in one clinical center.
abstract: For Turner syndrome (TS) patients, smooth transition from pediatric to adult health care is a critical point. The study objective was to evaluate the medical follow-up of young women with TS in one clinical center 3 years after the latest guidelines had been introduced by the TS Study Group. A questionnaire study was performed in 59 TS adults selected from a database of 117 patients. Twenty-two of them, aged 23.0 ± 2.8 years, consented to participate. Nineteen responders (86.4%) were followed up by general practitioners who were not aware of the TS diagnosis in 14 (63.6%) cases. Eight (36.4%) were seen regularly by the relevant specialists. Adequate medical assessment varied from 5% (celiac serology) to 74% (gynecology assessment) and 82% (ear-nose-throat) of participants. None of the patients had undergone all of the recommended investigations according to recommendation. Height deficiency, body mass index, age at TS diagnosis and level of education did not correlate with the number of assessments performed (p = 0.687, p = 0.810, p = 0.641, and p = 0.568, respectively). Three years after the introduction of the current guidelines, medical follow-up in the transition phase is still inadequate. Improvement in transitional health care is warranted through better patient education, referring to physicians caring for adults with TS and better cooperation with general practitioners with wider popularization of the TS recommendations among them.
authors.affiliation: Department of Pediatrics, Pediatric Endocrinology and Diabetes, Medical University of Silesia, Katowice, Poland. agawlik@mp.pl
authors.forename: Aneta
authors.initials: A
authors.lastname: Gawlik
authors.forename: Barbara
authors.initials: B
authors.lastname: Kaczor
authors.forename: Halla
authors.initials: H
authors.lastname: Kaminska
authors.forename: Agnieszka
authors.initials: A
authors.lastname: Zachurzok-Buczynska
authors.forename: Tomasz
authors.initials: T
authors.lastname: Gawlik
authors.forename: Ewa
authors.initials: E
authors.lastname: Malecka-Tendera
mesh_terms: D000293:Adolescent; D000328:Adult; D015897:Comorbidity; D005260:Female; D005500:Follow-Up Studies; D019983:Guideline Adherence; D019382:Human Growth Hormone / Q000627:therapeutic use; D006801:Humans; D008499:Medical Records; D011044:Poland / Q000453:epidemiology; D017410:Practice Guidelines as Topic; D011787:Quality of Health Care; D011994:Recombinant Proteins / Q000627:therapeutic use; D011795:Surveys and Questionnaires; D060305:Transition to Adult Care / Q000592:standards; D014424:Turner Syndrome / Q000188:drug therapy / Q000453:epidemiology / Q000628:therapy*; D055815:Young Adult
chemical_list: D011994:Recombinant Proteins; D019382:Human Growth Hormone