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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...

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Autores principales: Stasch, Luisa, Ohlendorf, Johanna, Baumann, Ulrich, Ernst, Gundula, Lange, Karin, Konietzny, Christiane, Pfister, Eva-Doreen, Sautmann, Kirsten, Goldschmidt, Imeke
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8774947/
https://www.ncbi.nlm.nih.gov/pubmed/35053722
http://dx.doi.org/10.3390/children9010098
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author Stasch, Luisa
Ohlendorf, Johanna
Baumann, Ulrich
Ernst, Gundula
Lange, Karin
Konietzny, Christiane
Pfister, Eva-Doreen
Sautmann, Kirsten
Goldschmidt, Imeke
author_facet Stasch, Luisa
Ohlendorf, Johanna
Baumann, Ulrich
Ernst, Gundula
Lange, Karin
Konietzny, Christiane
Pfister, Eva-Doreen
Sautmann, Kirsten
Goldschmidt, Imeke
author_sort Stasch, Luisa
collection PubMed
description 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.
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spelling pubmed-87749472022-01-21 Parental Disease Specific Knowledge and Its Impact on Health-Related Quality of Life Stasch, Luisa Ohlendorf, Johanna Baumann, Ulrich Ernst, Gundula Lange, Karin Konietzny, Christiane Pfister, Eva-Doreen Sautmann, Kirsten Goldschmidt, Imeke Children (Basel) Article 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. MDPI 2022-01-11 /pmc/articles/PMC8774947/ /pubmed/35053722 http://dx.doi.org/10.3390/children9010098 Text en © 2022 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Stasch, Luisa
Ohlendorf, Johanna
Baumann, Ulrich
Ernst, Gundula
Lange, Karin
Konietzny, Christiane
Pfister, Eva-Doreen
Sautmann, Kirsten
Goldschmidt, Imeke
Parental Disease Specific Knowledge and Its Impact on Health-Related Quality of Life
title Parental Disease Specific Knowledge and Its Impact on Health-Related Quality of Life
title_full Parental Disease Specific Knowledge and Its Impact on Health-Related Quality of Life
title_fullStr Parental Disease Specific Knowledge and Its Impact on Health-Related Quality of Life
title_full_unstemmed Parental Disease Specific Knowledge and Its Impact on Health-Related Quality of Life
title_short Parental Disease Specific Knowledge and Its Impact on Health-Related Quality of Life
title_sort parental disease specific knowledge and its impact on health-related quality of life
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8774947/
https://www.ncbi.nlm.nih.gov/pubmed/35053722
http://dx.doi.org/10.3390/children9010098
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