Parental Disease Specific Knowledge and Its Impact on Health-Related Quality of Life.

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.

Two Sides of a Coin: Parental Disease-Specific Training as Seen by Health Care Practitioners and Parents in Pediatric Liver Transplantation.

In the absence of widely accepted education standards for parents of children after liver transplantation (LTx), the content and structure of parental training are influenced by health care practitioners' (HCP) individual knowledge and assessment of the relevance of its contents. This study examines the hypothesis that expectations towards training differ between HCPs and parents, and that the quality of parental training affects the job-satisfaction of HCPs. Attitudes towards disease-specific education were assessed by tailor-made questionnaires in HCPs (n = 20) and parents of children with chronic liver disease or after LTx (n = 113). These were supplemented by focused interviews in n = 7 HCPs and n = 16 parents. Parents were more satisfied with current counseling than HCP. Language barriers and low parental educational background were perceived as obstacles by 43% of HCPs. The quality of parental knowledge was felt to have a strong influence on HCPs job satisfaction. The expectations towards the content of disease-specific education largely overlap but are not synonymous. HCP and parents agreed with regards to the importance of medication knowledge. Parents rated the importance about the meaning of laboratory values and diagnostic procedures significantly higher (3.50 vs. 2.85, p < 0.001 and 3.42 vs. 2.80, p < 0.001) than HCPs. Parents and HCPs would prefer a structured framework with sufficient staff resources for disease-specific counseling.