ArticleChildren (Basel, Switzerland)2022
Parental Disease Specific Knowledge and Its Impact on Health-Related Quality of Life.
Article in Children (Basel, Switzerland), 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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Who cites it
3 citing papers in PubMed, 3 citations in OpenAlex.
- Understanding Disease Aetiology and Related Needs Knowledge of Parents of Children With Spina Bifida.Child: care, health and development · 2026Article
- Knowledge, attitudes, and practices among the general community population toward heatstroke.Frontiers in public health · 2024Article
- Health-related quality of life among adolescents with type 1 diabetes since the second wave of the COVID-19 pandemic in Germany.Family medicine and community health · 2023Article
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Authors and funding
9 authors at 1 institution in 1 country.
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Abstract
objectiveStructured 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.
methodsParents 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.
resultsParental 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.
conclusionPatient 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.
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