| Service users' experiences of obtaining and giving information about disorders of sex development. | |
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MedLine Citation:
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PMID: 19843046 Owner: NLM Status: MEDLINE |
Abstract/OtherAbstract:
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OBJECTIVE: To quantify participants' experiences of obtaining and giving information about disorders of sex development (DSD). DESIGN: Cross-sectional survey study that asked people about their current and past experiences relating to DSD disclosure. SETTING: A large tertiary referral centre for DSD management in the UK. POPULATION: One hundred of 126 people with a confirmed diagnosis of DSD who were invited to participate in the study formed the usable sample. METHODS: All people who attended clinic for follow-up during the study period and members of a patient support group whose annual meeting fell within the study period were asked to complete the Middlesex Communication Survey. MAIN OUTCOME MEASURES: The Middlesex Communication Survey. RESULTS: Younger participants were more likely to report having been appropriately informed about their diagnosis than older people. Nearly half of the former had been fully informed about their diagnosis by age 15 years, compared with 0% of the older age group. In terms of information sharing, mothers were most likely to be the person with whom the participant had shared (almost/all) DSD information (74%), followed by current partners (71%). Information relating to genital surgery, presence of testes and clitoral anomalies were the least likely aspects to have been unambiguously shared with even the most informed person. CONCLUSIONS: Our results suggest that difficulties in obtaining DSD information from care providers were common, and that communication has improved for younger participants. The study also confirmed that many people with DSD continue to struggle with confiding, even in those closest to them, about aspects of their diagnosis. Care protocol needs to centralise psychological adaptation, which should also be a primary focus for future research. |
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Authors:
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L-M Liao; H Green; S M Creighton; N S Crouch; G S Conway |
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Publication Detail:
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Type: Journal Article; Research Support, Non-U.S. Gov't |
Journal Detail:
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Title: BJOG : an international journal of obstetrics and gynaecology Volume: 117 ISSN: 1471-0528 ISO Abbreviation: BJOG Publication Date: 2010 Jan |
Date Detail:
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Created Date: 2009-12-16 Completed Date: 2010-03-24 Revised Date: - |
Medline Journal Info:
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Nlm Unique ID: 100935741 Medline TA: BJOG Country: England |
Other Details:
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Languages: eng Pagination: 193-9 Citation Subset: AIM; IM |
Affiliation:
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UCL Institute for Women's Health, London, UK. lih-mei.liao@uclh.nhs.uk |
Export Citation:
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APA/MLA Format Download EndNote Download BibTex |
| MeSH Terms | |
Descriptor/Qualifier:
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Adolescent Adult Age Factors Attitude to Health* Cross-Sectional Studies Disclosure / ethics, statistics & numerical data* Family Relations Female Great Britain Humans Male Middle Aged Physician-Patient Relations* Sex Differentiation Disorders / psychology*, surgery Spouses / psychology Truth Disclosure / ethics Young Adult |
| Grant Support | |
ID/Acronym/Agency:
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//Department of Health |
From MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine
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