Abstract
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.
Highlights
The focus of care for children after liver transplantation has moved in recent years from survival to reduction of long-term comorbidities [1,2,3]
In other chronic diseases of childhood, such as diabetes or asthma, great success has been achieved by introducing structured education programs for children and their parents [11,12,13,14,15]
Limited data are available on the effects of structured education interventions in paediatric liver transplantation
Summary
The focus of care for children after liver transplantation has moved in recent years from survival to reduction of long-term comorbidities [1,2,3]. In other chronic diseases of childhood, such as diabetes or asthma, great success has been achieved by introducing structured education programs for children and their parents [11,12,13,14,15]. For these disease entities, improvement of both somatic outcome and health-related quality of life (HRQOL) through structured education interventions has been repeatedly demonstrated. Lerret et al have examined whether pre-discharge education and parental perception of readiness for discharge are associated with a reduction in coping difficulties and health-care utilization in children after solid organ transplantation [16]. No formal assessment of parental disease-specific knowledge was made
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