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Impact on parents of HLA-DQ2/DQ8 genotyping in healthy children from coeliac families.
Eur J Hum Genet 2015; 23(3):405-8EJ

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+Show Affiliations

Department of Pediatrics, Leiden University Medical Center, Leiden, The Netherlands.Department of Pediatrics, Leiden University Medical Center, Leiden, The Netherlands.Department of Pediatrics, Hauner Children's Hospital, Munich, Germany.Department of Pediatrics, Hauner Children's Hospital, Munich, Germany.Department of Pediatrics, Hospital Universitari de Sant Joan, Reus, Spain.Department of Pediatrics, Schneider Children's Medical Center, Tel Aviv, Israel.Department of Pediatrics, Schneider Children's Medical Center, Tel Aviv, Israel.Department of Statistics, Leiden University Medical Center, Leiden, The Netherlands.Department of Child Health, TNO, Leiden, The Netherlands.Department of Genetics, University of Groningen, University Medical Center, Groningen, The Netherlands.Department of Diagnostics, Eurospital S.p.A, Trieste, Italy.Department of Pediatrics, Leiden University Medical Center, Leiden, The Netherlands.No affiliation info available

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

24916643

Citation

Wessels, Margreet M S., et al. "Impact On Parents of HLA-DQ2/DQ8 Genotyping in Healthy Children From Coeliac Families." European Journal of Human Genetics : EJHG, vol. 23, no. 3, 2015, pp. 405-8.
Wessels MM, Vriezinga SL, Koletzko S, et al. Impact on parents of HLA-DQ2/DQ8 genotyping in healthy children from coeliac families. Eur J Hum Genet. 2015;23(3):405-8.
Wessels, M. M., Vriezinga, S. L., Koletzko, S., Werkstetter, K., Castillejo-De Villasante, G., Shamir, R., ... Mearin, M. L. (2015). Impact on parents of HLA-DQ2/DQ8 genotyping in healthy children from coeliac families. European Journal of Human Genetics : EJHG, 23(3), pp. 405-8. doi:10.1038/ejhg.2014.113.
Wessels MM, et al. Impact On Parents of HLA-DQ2/DQ8 Genotyping in Healthy Children From Coeliac Families. Eur J Hum Genet. 2015;23(3):405-8. PubMed PMID: 24916643.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Impact on parents of HLA-DQ2/DQ8 genotyping in healthy children from coeliac families. AU - Wessels,Margreet M S, AU - Vriezinga,Sabine L, AU - Koletzko,Sybille, AU - Werkstetter,Katharina, AU - Castillejo-De Villasante,Gemma, AU - Shamir,Raanan, AU - Hartman,Corina, AU - Putter,Hein, AU - van der Pal,Sylvia M, AU - Wijmenga,Cisca, AU - Bravi,Enzo, AU - Mearin,M Luisa, AU - ,, Y1 - 2014/06/11/ PY - 2014/01/05/received PY - 2014/05/11/revised PY - 2014/05/15/accepted PY - 2014/6/12/entrez PY - 2014/6/12/pubmed PY - 2015/10/23/medline SP - 405 EP - 8 JF - European journal of human genetics : EJHG JO - Eur. J. Hum. Genet. VL - 23 IS - 3 N2 - 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. SN - 1476-5438 UR - https://www.unboundmedicine.com/medline/citation/24916643/Impact_on_parents_of_HLA_DQ2/DQ8_genotyping_in_healthy_children_from_coeliac_families_ L2 - http://dx.doi.org/10.1038/ejhg.2014.113 DB - PRIME DP - Unbound Medicine ER -