Working Paper Article Version 1 This version is not peer-reviewed

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

Version 1 : Received: 19 September 2019 / Approved: 20 September 2019 / Online: 20 September 2019 (19:04:08 CEST)

How to cite: Abreu Paiva, L.M.; Gandolfi, L.; Pratesi, R.; Harumi Uenishi, R.; Puppin Zandonadi, R.; Nakano, E.; Pratesi, C. Measuring Quality of Life in Parents or Caregivers of children and adolescents with Celiac Disease: Development and Content Validation of the Questionnaire. Preprints 2019, 2019090242 Abreu Paiva, L.M.; Gandolfi, L.; Pratesi, R.; Harumi Uenishi, R.; Puppin Zandonadi, R.; Nakano, E.; Pratesi, C. Measuring Quality of Life in Parents or Caregivers of children and adolescents with Celiac Disease: Development and Content Validation of the Questionnaire. Preprints 2019, 2019090242

Abstract

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. The study was developed in six steps: (i) development of the CD parent/caregiver QoL questionnaire (CDPC-QoL); (ii) subjective evaluation; (iii) validation of the questionnaire by the Delphi method; (iv) evaluation of the internal consistency and reproducibility of the CDPC-QoL; (v) application of the questionnaire to Brazilian CD parents or caregivers; and (vi) statistical analysis. 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.

Subject Areas

quality of life; celiac disease; parents; caregivers

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