title: Anti-Ro/SSA autoantibody-positive women's experience of information given on the risk of congenital heart block.
abstract: 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.
authors.affiliation: Department of Medicine, Karolinska Institutet, Stockholm, Sweden.
authors.forename: J
authors.initials: J
authors.lastname: Tingström
authors.affiliation: Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
authors.forename: A
authors.initials: A
authors.lastname: Hjelmstedt
authors.affiliation: Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
authors.forename: E
authors.initials: E
authors.lastname: Welin Henriksson
authors.affiliation: Department of Medicine, Karolinska Institutet, Stockholm, Sweden.
authors.forename: A
authors.initials: A
authors.lastname: Ambrosi
authors.affiliation: Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
authors.forename: S-E
authors.initials: SE
authors.lastname: Sonesson
authors.affiliation: Department of Medicine, Karolinska Institutet, Stockholm, Sweden marie.wahren@ki.se.
authors.forename: M
authors.initials: M
authors.lastname: Wahren-Herlenius
mesh_terms: D022126:Access to Information; D000328:Adult; D000974:Antibodies, Antinuclear / Q000097:blood*; D001327:Autoimmune Diseases / Q000097:blood / Q000150:complications* / Q000175:diagnosis / Q000276:immunology; D015415:Biomarkers / Q000097:blood; D032882:Comprehension; D015150:Echocardiography, Doppler; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006327:Heart Block / Q000151:congenital* / Q000000981:diagnostic imaging / Q000209:etiology; D006801:Humans; D008875:Middle Aged; D010353:Patient Education as Topic; D018743:Perinatal Care / Q000379:methods*; D011247:Pregnancy; D018570:Risk Assessment; D012307:Risk Factors; D011795:Surveys and Questionnaires; D016216:Ultrasonography, Prenatal; D055815:Young Adult
chemical_list: D000974:Antibodies, Antinuclear; D015415:Biomarkers; C035356:SS-A antibodies
keywords: Congenital heart block; Doppler echocardiography; Ro/SSA autoantibodies; Sjögren's syndrome; pregnancy; systemic lupus erythematosus