Care of girls and women with Turner syndrome: beyond growth and hormones
Identifieur interne : 000733 ( Main/Exploration ); précédent : 000732; suivant : 000734Care of girls and women with Turner syndrome: beyond growth and hormones
Auteurs : Caroline Culen ; Diana-Alexandra Ertl ; Katharina Schubert ; Lisa Bartha-Doering ; Gabriele HaeuslerSource :
- Endocrine Connections [ 2049-3614 ] ; 2017.
Abstract
Turner syndrome (TS), although considered a rare disease, is the most common sex chromosome abnormality in women, with an incident of 1 in 2500 female births. TS is characterized by distinctive physical features such as short stature, ovarian dysgenesis, an increased risk for heart and renal defects as well as a specific cognitive and psychosocial phenotype. Given the complexity of the condition, patients face manifold difficulties which increase over the lifespan. Furthermore, failures during the transitional phase to adult care result in moderate health outcomes and decreased quality of life. Guidelines on the optimal screening procedures and medical treatment are easy to find. However, recommendations for the treatment of the incriminating psychosocial aspects in TS are scarce. In this work, we first reviewed the literature on the cognitive and psychosocial development of girls with TS compared with normal development, from disclosure to young adulthood, and then introduce a psychosocial approach to counseling and treating patients with TS, including recommendations for age-appropriate psychological diagnostics. With this work, we aim to facilitate the integration of emphasized psychosocial care in state-of-the-art treatment for girls and women with TS.
Url:
DOI: 10.1530/EC-17-0036
PubMed: 28336768
PubMed Central: 5434744
Affiliations:
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<record><TEI><teiHeader><fileDesc><titleStmt><title xml:lang="en">Care of girls and women with Turner syndrome: beyond growth and hormones</title><author><name sortKey="Culen, Caroline" sort="Culen, Caroline" uniqKey="Culen C" first="Caroline" last="Culen">Caroline Culen</name><affiliation><nlm:aff id="aff1"></nlm:aff></affiliation></author><author><name sortKey="Ertl, Diana Alexandra" sort="Ertl, Diana Alexandra" uniqKey="Ertl D" first="Diana-Alexandra" last="Ertl">Diana-Alexandra Ertl</name><affiliation><nlm:aff id="aff1"></nlm:aff></affiliation></author><author><name sortKey="Schubert, Katharina" sort="Schubert, Katharina" uniqKey="Schubert K" first="Katharina" last="Schubert">Katharina Schubert</name><affiliation><nlm:aff id="aff1"></nlm:aff></affiliation></author><author><name sortKey="Bartha Doering, Lisa" sort="Bartha Doering, Lisa" uniqKey="Bartha Doering L" first="Lisa" last="Bartha-Doering">Lisa Bartha-Doering</name><affiliation><nlm:aff id="aff1"></nlm:aff></affiliation></author><author><name sortKey="Haeusler, Gabriele" sort="Haeusler, Gabriele" uniqKey="Haeusler G" first="Gabriele" last="Haeusler">Gabriele Haeusler</name><affiliation><nlm:aff id="aff1"></nlm:aff></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PMC</idno><idno type="pmid">28336768</idno><idno type="pmc">5434744</idno><idno type="url">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5434744</idno><idno type="RBID">PMC:5434744</idno><idno type="doi">10.1530/EC-17-0036</idno><date when="2017">2017</date><idno type="wicri:Area/Pmc/Corpus">004980</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Corpus" wicri:corpus="PMC">004980</idno><idno type="wicri:Area/Pmc/Curation">004979</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Curation">004979</idno><idno type="wicri:Area/Pmc/Checkpoint">000372</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Checkpoint">000372</idno><idno type="wicri:Area/Ncbi/Merge">008E95</idno><idno type="wicri:Area/Ncbi/Curation">008E95</idno><idno type="wicri:Area/Ncbi/Checkpoint">008E95</idno><idno type="wicri:Area/Main/Merge">000734</idno><idno type="wicri:Area/Main/Curation">000733</idno><idno type="wicri:Area/Main/Exploration">000733</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en" level="a" type="main">Care of girls and women with Turner syndrome: beyond growth and hormones</title><author><name sortKey="Culen, Caroline" sort="Culen, Caroline" uniqKey="Culen C" first="Caroline" last="Culen">Caroline Culen</name><affiliation><nlm:aff id="aff1"></nlm:aff></affiliation></author><author><name sortKey="Ertl, Diana Alexandra" sort="Ertl, Diana Alexandra" uniqKey="Ertl D" first="Diana-Alexandra" last="Ertl">Diana-Alexandra Ertl</name><affiliation><nlm:aff id="aff1"></nlm:aff></affiliation></author><author><name sortKey="Schubert, Katharina" sort="Schubert, Katharina" uniqKey="Schubert K" first="Katharina" last="Schubert">Katharina Schubert</name><affiliation><nlm:aff id="aff1"></nlm:aff></affiliation></author><author><name sortKey="Bartha Doering, Lisa" sort="Bartha Doering, Lisa" uniqKey="Bartha Doering L" first="Lisa" last="Bartha-Doering">Lisa Bartha-Doering</name><affiliation><nlm:aff id="aff1"></nlm:aff></affiliation></author><author><name sortKey="Haeusler, Gabriele" sort="Haeusler, Gabriele" uniqKey="Haeusler G" first="Gabriele" last="Haeusler">Gabriele Haeusler</name><affiliation><nlm:aff id="aff1"></nlm:aff></affiliation></author></analytic><series><title level="j">Endocrine Connections</title><idno type="eISSN">2049-3614</idno><imprint><date when="2017">2017</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><p>Turner syndrome (TS), although considered a rare disease, is the most common sex chromosome abnormality in women, with an incident of 1 in 2500 female births. TS is characterized by distinctive physical features such as short stature, ovarian dysgenesis, an increased risk for heart and renal defects as well as a specific cognitive and psychosocial phenotype. Given the complexity of the condition, patients face manifold difficulties which increase over the lifespan. Furthermore, failures during the transitional phase to adult care result in moderate health outcomes and decreased quality of life. Guidelines on the optimal screening procedures and medical treatment are easy to find. However, recommendations for the treatment of the incriminating psychosocial aspects in TS are scarce. In this work, we first reviewed the literature on the cognitive and psychosocial development of girls with TS compared with normal development, from disclosure to young adulthood, and then introduce a psychosocial approach to counseling and treating patients with TS, including recommendations for age-appropriate psychological diagnostics. 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Fuqua</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Oktay, K" uniqKey="Oktay K">K Oktay</name></author><author><name sortKey="Bedoschi, G" uniqKey="Bedoschi G">G Bedoschi</name></author><author><name sortKey="Berkowitz, K" uniqKey="Berkowitz K">K Berkowitz</name></author><author><name sortKey="Bronson, R" uniqKey="Bronson R">R Bronson</name></author><author><name sortKey="Kashani, B" uniqKey="Kashani B">B Kashani</name></author><author><name sortKey="Mcgovern, P" uniqKey="Mcgovern P">P McGovern</name></author><author><name sortKey="Pal, L" uniqKey="Pal L">L Pal</name></author><author><name sortKey="Quinn, G" uniqKey="Quinn G">G Quinn</name></author><author><name sortKey="Rubin, K" uniqKey="Rubin K">K. Rubin</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Wechsler, D" uniqKey="Wechsler D">D. Wechsler</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Weitzman, C" uniqKey="Weitzman C">C Weitzman</name></author><author><name sortKey="Wegner, L" uniqKey="Wegner L">L. Wegner</name></author></analytic></biblStruct><biblStruct></biblStruct></listBibl></div1></back></TEI><affiliations><list></list><tree><noCountry><name sortKey="Bartha Doering, Lisa" sort="Bartha Doering, Lisa" uniqKey="Bartha Doering L" first="Lisa" last="Bartha-Doering">Lisa Bartha-Doering</name><name sortKey="Culen, Caroline" sort="Culen, Caroline" uniqKey="Culen C" first="Caroline" last="Culen">Caroline Culen</name><name sortKey="Ertl, Diana Alexandra" sort="Ertl, Diana Alexandra" uniqKey="Ertl D" first="Diana-Alexandra" last="Ertl">Diana-Alexandra Ertl</name><name sortKey="Haeusler, Gabriele" sort="Haeusler, Gabriele" uniqKey="Haeusler G" first="Gabriele" last="Haeusler">Gabriele Haeusler</name><name sortKey="Schubert, Katharina" sort="Schubert, Katharina" uniqKey="Schubert K" first="Katharina" last="Schubert">Katharina Schubert</name></noCountry></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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