Measuring Quality of Life in Parents or Caregivers of Children and Adolescents with Celiac Disease: Development and Content Validation of the Questionnaire

Celiac disease (CD) is an autoimmune disorder triggered by the ingestion of gluten and affects approximately 1% of the global population. Currently, the only treatment available is lifelong strict adherence to a gluten-free diet (GFD). Chronic diseases such as CD affect patients and their family mem...

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Bibliographic Details
Published in:	Nutrients Vol. 11; no. 10; p. 2302
Main Authors:	Abreu Paiva, Liliane Maria, Gandolfi, Lenora, Pratesi, Riccardo, Harumi Uenishi, Rosa, Puppin Zandonadi, Renata, Nakano, Eduardo Yoshio, Pratesi, Claudia B
Format:	Journal Article
Language:	English
Published:	Switzerland MDPI AG 27-09-2019 MDPI
Subjects:	Adolescent Adolescents Adult Anxiety Autoimmune diseases Barley Caregivers Caregivers - psychology Celiac disease Celiac Disease - psychology Child Children Children & youth Chronic illnesses Congestive heart failure Cost of Illness Diet Diet, Gluten-Free - psychology Families & family life Family - psychology Female Gastroenterology Gluten Health sciences Humans Logistics Male Meals Medical personnel Nutrition research Parents Parents & parenting Parents - psychology Post traumatic stress disorder Quality of life Quality of Life - psychology Questionnaires Reproducibility of Results Stress, Psychological - diagnosis Surveys and Questionnaires - standards Teenagers Brazil celiac disease caregivers quality of life parents
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Summary:	Celiac disease (CD) is an autoimmune disorder triggered by the ingestion of gluten and affects approximately 1% of the global population. Currently, the only treatment available is lifelong strict adherence to a gluten-free diet (GFD). Chronic diseases such as CD affect patients and their family members' quality of life (QoL); particularly parents and caregivers who play an essential role in the child's care and treatment. A higher level of psychological distress has been found in the parents of children with chronic ailments due to limited control over the child's daily activities and the child's illness. In this context, the validation of a specific questionnaire of QoL is a valuable tool to evaluate the difficulties faced by parents or caregivers of children with this chronic illness. A specific questionnaire for this population can elucidate the reasons for stress in their daily lives as well as the physical, mental, emotional, and social impact caused by CD. Therefore, this study aimed to develop and validate a specific questionnaire to evaluate the QoL of parents and caregivers of children and adolescents with CD. Overall results showed that a higher family income resulted in a higher score of the worries domain. In addition, having another illness besides CD decreased the QoL (except in the worries domain). The other variables studied did not present a statistically significant impact on the QoL, which was shown to be low in all aspects. Knowledge of the QoL is important to help implement effective strategies to improve celiac patients' quality of life and reduce their physical, emotional, and social burden.
Bibliography:	ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 23 ObjectType-Undefined-3
ISSN:	2072-6643 2072-6643
DOI:	10.3390/nu11102302