title: Impact on parents of HLA-DQ2/DQ8 genotyping in healthy children from coeliac families.
abstract: Due to the association of coeliac disease and HLA-specificities DQ2 and DQ8, HLA-typing can be used for risk determination of the disease. This study was designed to evaluate the knowledge of parents from coeliac families regarding HLA-typing and the impact of HLA-typing on the perception of the health of their children. A structured questionnaire was sent to the Dutch, Spanish and German parents participating with their child in the European PreventCD study on disease prevention in high-risk families, addressing parents' understanding of and attitude towards HLA-typing, distress related to HLA-typing and perceived health and health-related quality of life of their children. Sixty-eight percent of parents of 515 children returned the questionnaires, with 85% of children being DQ2/DQ8 positive. The majority of all parents answered the questions on knowledge correctly. Forty-eight percent of parents of DQ2/DQ8-negative children thought their child could develop coeliac disease. More distress was reported by parents of DQ2/DQ8-positive children (P<0.001). All parents showed few regrets and would repeat HLA-typing in future children. Perceived health and health-related quality of life were similar. In conclusion, we can say that misinterpretation of DQ2/DQ8-negative results by parents is frequent. DQ2/DQ8-positive results do not affect perceived health and health-related quality of life of children but may cause temporary negative feelings among parents. Parents of coeliac families seem to support HLA-typing.
authors.affiliation: Department of Pediatrics, Leiden University Medical Center, Leiden, The Netherlands.
authors.forename: Margreet M S
authors.initials: MM
authors.lastname: Wessels
authors.affiliation: Department of Pediatrics, Leiden University Medical Center, Leiden, The Netherlands.
authors.forename: Sabine L
authors.initials: SL
authors.lastname: Vriezinga
authors.affiliation: Department of Pediatrics, Hauner Children's Hospital, Munich, Germany.
authors.forename: Sybille
authors.initials: S
authors.lastname: Koletzko
authors.affiliation: Department of Pediatrics, Hauner Children's Hospital, Munich, Germany.
authors.forename: Katharina
authors.initials: K
authors.lastname: Werkstetter
authors.affiliation: Department of Pediatrics, Hospital Universitari de Sant Joan, Reus, Spain.
authors.forename: Gemma
authors.initials: G
authors.lastname: Castillejo-De Villasante
authors.affiliation: Department of Pediatrics, Schneider Children's Medical Center, Tel Aviv, Israel.
authors.forename: Raanan
authors.initials: R
authors.lastname: Shamir
authors.affiliation: Department of Pediatrics, Schneider Children's Medical Center, Tel Aviv, Israel.
authors.forename: Corina
authors.initials: C
authors.lastname: Hartman
authors.affiliation: Department of Statistics, Leiden University Medical Center, Leiden, The Netherlands.
authors.forename: Hein
authors.initials: H
authors.lastname: Putter
authors.affiliation: Department of Child Health, TNO, Leiden, The Netherlands.
authors.forename: Sylvia M
authors.initials: SM
authors.lastname: van der Pal
authors.affiliation: Department of Genetics, University of Groningen, University Medical Center, Groningen, The Netherlands.
authors.forename: Cisca
authors.initials: C
authors.lastname: Wijmenga
authors.affiliation: Department of Diagnostics, Eurospital S.p.A, Trieste, Italy.
authors.forename: Enzo
authors.initials: E
authors.lastname: Bravi
authors.affiliation: Department of Pediatrics, Leiden University Medical Center, Leiden, The Netherlands.
authors.forename: M Luisa
authors.initials: ML
authors.lastname: Mearin
mesh_terms: D002446:Celiac Disease / Q000453:epidemiology* / Q000235:genetics*; D002648:Child; D002675:Child, Preschool; D005190:Family; D005260:Female; D020022:Genetic Predisposition to Disease; D005838:Genotype; D006683:HLA-DQ Antigens / Q000235:genetics*; D007722:Health Knowledge, Attitudes, Practice; D006650:Histocompatibility Testing; D006801:Humans; D007223:Infant; D008297:Male; D011795:Surveys and Questionnaires
chemical_list: D006683:HLA-DQ Antigens; C053186:HLA-DQ2 antigen; C109756:HLA-DQ8 antigen