| Autor: |
Wessels MM; Department of Pediatrics, Leiden University Medical Center, Leiden, The Netherlands., Vriezinga SL; Department of Pediatrics, Leiden University Medical Center, Leiden, The Netherlands., Koletzko S; Department of Pediatrics, Hauner Children's Hospital, Munich, Germany., Werkstetter K; Department of Pediatrics, Hauner Children's Hospital, Munich, Germany., Castillejo-De Villasante G; Department of Pediatrics, Hospital Universitari de Sant Joan, Reus, Spain., Shamir R; Department of Pediatrics, Schneider Children's Medical Center, Tel Aviv, Israel., Hartman C; Department of Pediatrics, Schneider Children's Medical Center, Tel Aviv, Israel., Putter H; Department of Statistics, Leiden University Medical Center, Leiden, The Netherlands., van der Pal SM; Department of Child Health, TNO, Leiden, The Netherlands., Wijmenga C; Department of Genetics, University of Groningen, University Medical Center, Groningen, The Netherlands., Bravi E; Department of Diagnostics, Eurospital S.p.A, Trieste, Italy., Mearin ML; Department of Pediatrics, Leiden University Medical Center, Leiden, The Netherlands. |
| Abstrakt: |
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. |
