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Anti-Ro/SSA autoantibody-positive women's experience of information given on the risk of congenital heart block.
Department of Medicine, Karolinska Institutet, Stockholm, Sweden.
Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.ORCID iD: 0000-0002-4258-5348
Department of Medicine, Karolinska Institutet, Stockholm, Sweden.
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2016 (English)In: Lupus, ISSN 0961-2033, E-ISSN 1477-0962, Vol. 25, no 5, p. 536-542Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: Congenital heart block (CHB) may develop in fetuses of women with anti-Ro/SSA autoantibodies, and carries substantial morbidity and mortality. The aim was to evaluate how information on CHB is imparted and identify areas of improvement.

METHODS: A questionnaire was distributed to anti-Ro/SSA antibody-positive women who had either participated in a surveillance programme but whose expected child did not develop CHB (n = 100, denoted Doppler-Assessed Pregnancies (DAP) group) or given birth to a child with CHB (n = 88, denoted CHB-Affected Pregnancies (CAP) group).

RESULTS: The response rate was 83% (157/188). Most women received the information on CHB when they were already pregnant (DAP group 60%, CAP group 83%). However, a majority of them would have wanted the information before pregnancy (DAP group 52%, CAP group 56%), and most stated that it would not have influenced their decision to have a child (DAP group 77%, CAP group 58%). The ability to both understand the information and to perceive the information as sufficient were significantly higher when someone trained in paediatric cardiology gave the information.

CONCLUSIONS: Our findings indicate that information on CHB should be given to women before pregnancy. The data further highlight the importance of having specific knowledge for giving relevant and understandable, yet sufficient information.

Place, publisher, year, edition, pages
Sage Publications, 2016. Vol. 25, no 5, p. 536-542
Keywords [en]
Congenital heart block, Doppler echocardiography, Ro/SSA autoantibodies, Sjögren's syndrome, pregnancy, systemic lupus erythematosus
National Category
Medical and Health Sciences Rheumatology and Autoimmunity
Identifiers
URN: urn:nbn:se:oru:diva-70530DOI: 10.1177/0961203315620760ISI: 000372150400012PubMedID: 26670329Scopus ID: 2-s2.0-84962522765OAI: oai:DiVA.org:oru-70530DiVA, id: diva2:1298535
Funder
Swedish Research CouncilRagnar Söderbergs stiftelseGöran Gustafsson Foundation for Research in Natural Sciences and MedicineSwedish Heart Lung FoundationThe Karolinska Institutet's Research FoundationSwedish Rheumatism Association
Note

Funding Agencies:

King Gustaf the Vth 80-year foundation

Freemasons Foundation Stockholm

Available from: 2019-03-24 Created: 2019-03-24 Last updated: 2019-04-08Bibliographically approved

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Welin Henriksson, Elisabet

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