Parental Disease Specific Knowledge and Its Impact on Health-Related Quality of Life
Luisa Stasch,
Johanna Ohlendorf,
Ulrich Baumann,
Gundula Ernst,
Karin Lange,
Christiane Konietzny,
Eva-Doreen Pfister,
Kirsten Sautmann,
Imeke Goldschmidt
Affiliations
Luisa Stasch
Division of Paediatric Gastroenterology, Hepatology and Liver Transplantation, Department of Paediatric Kidney, Liver and Metabolic Diseases, Hannover Medical School, 30625 Hannover, Germany
Johanna Ohlendorf
Division of Paediatric Gastroenterology, Hepatology and Liver Transplantation, Department of Paediatric Kidney, Liver and Metabolic Diseases, Hannover Medical School, 30625 Hannover, Germany
Ulrich Baumann
Division of Paediatric Gastroenterology, Hepatology and Liver Transplantation, Department of Paediatric Kidney, Liver and Metabolic Diseases, Hannover Medical School, 30625 Hannover, Germany
Gundula Ernst
Medical Psychology, Hannover Medical School, 30625 Hannover, Germany
Karin Lange
Medical Psychology, Hannover Medical School, 30625 Hannover, Germany
Christiane Konietzny
Division of Paediatric Gastroenterology, Hepatology and Liver Transplantation, Department of Paediatric Kidney, Liver and Metabolic Diseases, Hannover Medical School, 30625 Hannover, Germany
Eva-Doreen Pfister
Division of Paediatric Gastroenterology, Hepatology and Liver Transplantation, Department of Paediatric Kidney, Liver and Metabolic Diseases, Hannover Medical School, 30625 Hannover, Germany
Kirsten Sautmann
Medical Psychology, Hannover Medical School, 30625 Hannover, Germany
Imeke Goldschmidt
Division of Paediatric Gastroenterology, Hepatology and Liver Transplantation, Department of Paediatric Kidney, Liver and Metabolic Diseases, Hannover Medical School, 30625 Hannover, Germany
Objective: Structured education programs have been shown to improve somatic outcome and health-related quality of life (HRQOL) in a variety of chronic childhood diseases. Similar data are scarce in paediatric liver transplantation (pLTx). The purpose of this study was to examine the relationship of parental disease-specific knowledge and psychosocial disease outcome in patients after pLTx. Methods: Parents of 113 children (chronic liver disease n = 25, after pLTx n = 88) completed the transplant module of the HRQOL questionnaire PedsQL, the “Ulm quality of life inventory for parents of children with chronic diseases” ULQUI, and a tailor-made questionnaire to test disease-specific knowledge. Results: Parental knowledge was highest on the topic of “liver transplantation” and lowest in “basic background knowledge” (76% and 56% correct answers respectively). Knowledge performance was only marginally associated with HRQOL scores, with better knowledge being related to worse HRQOL outcomes. In contrast, self-estimation of knowledge performance showed significant positive correlations with both PedsQL and ULQUI results. Conclusion: Patient HRQOL and parental emotional wellbeing after pLTx are associated with positive self-estimation of parental disease-specific knowledge. Objective disease-specific knowledge has little impact on HRQOL. Parental education programs need to overcome language barriers and address self-efficacy in order to improve HRQOL after pLTx.
