Literature DB >> 22538845

Quality of medical follow-up of young women with Turner syndrome treated in one clinical center.

Aneta Gawlik1, Barbara Kaczor, Halla Kaminska, Agnieszka Zachurzok-Buczynska, Tomasz Gawlik, Ewa Malecka-Tendera.   

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.
Copyright © 2012 S. Karger AG, Basel.

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Year:  2012        PMID: 22538845     DOI: 10.1159/000337780

Source DB:  PubMed          Journal:  Horm Res Paediatr        ISSN: 1663-2818            Impact factor:   2.852


  8 in total

1.  Postoperative complications in adults with anorectal malformation: a need for transition. German Network for Congenital Uro-REctal Malformations (CURE-Net).

Authors:  Dominik Schmidt; Ekkehart Jenetzky; Nadine Zwink; Eberhard Schmiedeke; Stefanie Maerzheuser
Journal:  Pediatr Surg Int       Date:  2012-08       Impact factor: 1.827

Review 2.  Effect of estrogen replacement therapy on bone and cardiovascular outcomes in women with turner syndrome: a systematic review and meta-analysis.

Authors:  Dahima Cintron; Rene Rodriguez-Gutierrez; Valentina Serrano; Paula Latortue-Albino; Patricia J Erwin; Mohammad Hassan Murad
Journal:  Endocrine       Date:  2016-07-29       Impact factor: 3.633

3.  Endocrine autoimmunity in Turner syndrome.

Authors:  Armando Grossi; Antonino Crinò; Rosa Luciano; Antonietta Lombardo; Marco Cappa; Alessandra Fierabracci
Journal:  Ital J Pediatr       Date:  2013-12-20       Impact factor: 2.638

Review 4.  Care of girls and women with Turner syndrome: beyond growth and hormones.

Authors:  Caroline Culen; Diana-Alexandra Ertl; Katharina Schubert; Lisa Bartha-Doering; Gabriele Haeusler
Journal:  Endocr Connect       Date:  2017-03-23       Impact factor: 3.335

5.  Health status, quality of life and medical care in adult women with Turner syndrome.

Authors:  Diana-Alexandra Ertl; Andreas Gleiss; Katharina Schubert; Caroline Culen; Peer Hauck; Johannes Ott; Alois Gessl; Gabriele Haeusler
Journal:  Endocr Connect       Date:  2018-03-07       Impact factor: 3.335

6.  Less ready for adulthood?-Turner syndrome has an impact on transition readiness.

Authors:  Caroline Culen; Marion Herle; Diana-Alexandra Ertl; Elke Fröhlich-Reiterer; Peter Blümel; Gudrun Wagner; Gabriele Häusler
Journal:  Clin Endocrinol (Oxf)       Date:  2020-08-14       Impact factor: 3.478

7.  Management of Turner Syndrome.

Authors:  Aneta Gawlik
Journal:  Eur Endocrinol       Date:  2015-08-19

Review 8.  Community based Primary Care for Adolescents and Young Adults Transitioning From Pediatric Specialty Care: Results from a Scoping Review.

Authors:  Kyleigh Schraeder; Brooke Allemang; Ashley N Felske; Cathie M Scott; Kerry A McBrien; Gina Dimitropoulos; Susan Samuel
Journal:  J Prim Care Community Health       Date:  2022 Jan-Dec
  8 in total

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