Josefa Barrio1,2, María Luz Cilleruelo3, Enriqueta Román3, Cristina Fernández4. 1. Department of Paediatrics, Hospital Universitario de Fuenlabrada, Madrid, Spain. jbarrio.hflr@gmail.com. 2. , Madrid, Spain. jbarrio.hflr@gmail.com. 3. Department of Paediatrics, Hospital Universitario Puerta Hierro, Madrid, Spain. 4. Department of Epidemiology, Hospital Universitario Clínico, Madrid, Spain.
Abstract
The aim of this study is to assess the impact of coeliac disease (CD) on health-related quality of life (HRQOL) using the generic KIDSCREEN-52 questionnaire in a group of Spanish children aged 8-18 years and their parents. For this cross-sectional study, coeliac children in the targeted age range, who are members of the Madrid Coeliac Association (MCA), were invited to participate. The Spanish version of the generic KIDSCREEN-52 questionnaire was administered via e-mail. Scores (on a scale from 1 to 100) were expressed as the mean and standard deviation (SD). Demographic and clinical variables related to HRQOL were also assessed. The questionnaire was completed by 434 children and/or their parents. Respondents gave scores of over 50 to seven quality of life domains. Mean scores were significantly higher in children than in their parents for six out of ten domains. In contrast, parents awarded significantly higher scores to the "social support and peers" domain than children did. Significantly lower QOL scores were reported by girls, children aged 16-18 years, children older than 7 years at the time of CD diagnosis, and respondents who did not adhere to the prescribed diet or had difficulty in doing so. CONCLUSION: Overall, the KIDSCREEN-52 questionnaire revealed that CD had no substantial negative impacts on the children's QOL. However, some concerns from the children's perspective were identified, such as issues regarding relationships with their peers. These issues will need to be addressed in order to improve QOL in children with CD. What is Known: • According to the Spanish version of the specific CDDUX, parents and children felt CD had no substantial negative impacts on their HRQOL. What is New: • According to the generic KIDSCREEN-52 questionnaire, QOL in Spanish coeliac children does not seem to be negatively affected by the disease in most general aspects of life. • Parents have a worse perception of their children's HRQOL than their children themselves.
The aim of this study is to assess the impact of coeliac disease (CD) on health-related quality of life (HRQOL) using the generic KIDSCREEN-52 questionnaire in a group of Spanish children aged 8-18 years and their parents. For this cross-sectional study, coeliac children in the targeted age range, who are members of the Madrid Coeliac Association (MCA), were invited to participate. The Spanish version of the generic KIDSCREEN-52 questionnaire was administered via e-mail. Scores (on a scale from 1 to 100) were expressed as the mean and standard deviation (SD). Demographic and clinical variables related to HRQOL were also assessed. The questionnaire was completed by 434 children and/or their parents. Respondents gave scores of over 50 to seven quality of life domains. Mean scores were significantly higher in children than in their parents for six out of ten domains. In contrast, parents awarded significantly higher scores to the "social support and peers" domain than children did. Significantly lower QOL scores were reported by girls, children aged 16-18 years, children older than 7 years at the time of CD diagnosis, and respondents who did not adhere to the prescribed diet or had difficulty in doing so. CONCLUSION: Overall, the KIDSCREEN-52 questionnaire revealed that CD had no substantial negative impacts on the children's QOL. However, some concerns from the children's perspective were identified, such as issues regarding relationships with their peers. These issues will need to be addressed in order to improve QOL in children with CD. What is Known: • According to the Spanish version of the specific CDDUX, parents and children felt CD had no substantial negative impacts on their HRQOL. What is New: • According to the generic KIDSCREEN-52 questionnaire, QOL in Spanish coeliac children does not seem to be negatively affected by the disease in most general aspects of life. • Parents have a worse perception of their children's HRQOL than their children themselves.
Entities:
Keywords:
Coeliac disease; Outcome health; Quality of life; Questionnaire
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