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

Stasch, Luisa; Ohlendorf, Johanna ORCID; Baumann, Ulrich ORCID; Ernst, Gundula GND; Lange, Karin ORCID; Konietzny, Christiane; Pfister, Eva-Doreen GND; Sautmann, Kirsten; Goldschmidt, Imeke ORCID

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.

Cite

Citation style:

Stasch, Luisa / Ohlendorf, Johanna / Baumann, Ulrich / et al: Parental Disease Specific Knowledge and Its Impact on Health-Related Quality of Life. 2022.

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