A nationwide survey on the information preferences of parents of children with developmental dysplasia of the hip compared with pediatric orthopedic surgeons' perspectives.

Abstract

The diagnosis and treatment of developmental dysplasia of the hip (DDH) can be stressful for parents, often worsened by inadequate information. The primary aim of this study is to assess whether the information preferences of parents of children with DDH, identified in a prior single-center study, are generalizable across the Netherlands. A secondary aim is to compare these preferences with the perspectives of pediatric orthopedic surgeons. An online survey was conducted between September and November 2023 among parents of children with DDH and pediatric orthopedic surgeons in the Netherlands. Based on prior qualitative research, the survey included closed- and open-ended questions regarding the content, timing, and format of information delivery. A total of 177 parents and 20 pediatric orthopedic surgeons completed the survey. Median response scores were ≥7 across all questions, suggesting that previously identified parental preferences are applicable nationwide. Both parents and pediatric orthopedic surgeons emphasized the importance of accessible and understandable information to people at all levels of society. Parents strongly preferred reliable DDH-related information before diagnosis and valued resources they could revisit at home, such as websites or printed materials. However, parents showed minimal interest in a smartphone application, a preference that contrasted with pediatric orthopedic surgeons' perspectives. This nationwide study provides a comprehensive overview of the information preferences of parents in DDH care. Comparing these findings with the perspectives of pediatric orthopedic surgeons offers valuable insights for optimizing information delivery. This can help refine information delivery strategies, ultimately enhancing disease understanding, parental satisfaction, and treatment adherence.