Activities, Participation and Quality of Life Concepts in Children and Adolescents with Celiac Disease: A Scoping Review

Abstract

Celiac disease (CD) is a food-related chronic condition and adherence to a strict gluten-free diet is the only available treatment. Adherence to the restrictive diet is challenging among children, especially adolescents. The aim was to describe existing knowledge about food-related activities, participation, and quality of life in daily life among children and adolescents with CD and to illuminate gaps in knowledge. The scoping review methodology was applied and literature searches were conducted in electronic databases. Twenty-three articles met the inclusion criteria. Food-related activities were identified, classified, and coded under the International Classification of Functioning, Disability, and Health adapted for children and youth (ICF-CY) concepts of activities and participation. A wide variety of study populations, objectives, methods, and tools involving 55 different food-related activities were found. Incorporation of the ICF-CY concepts and quality of life captures new insights into everyday challenges. Reviewing the CD literature using this different lens reveals areas yet to receive sufficient attention. Further research can deepen the understanding of daily functioning of children with CD and the underlying skills required to participate in daily food-related activities while adhering to the diet. This can lead to the development of standardized disease-specific assessment tools and suitable intervention programs.

Social and Emotional Fears and Worries Influencing the Quality of Life of Female Celiac Disease Patients Following a Gluten-Free Diet

“…It would be interesting to conduct a similar study with a group of male CD patients, in order to compare results for men and women, as it has been claimed that there are general gender-related differences in the clinical presentation of CD [ 55 ]. Also, conducting a similar study with a group of children would be interesting, as it is especially challenging for children, in particular teenagers, to adhere to GFD [ 56 ].…”

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

“…The long-term consequences of childhood or adolescent CD can negatively impact the health of the parents or caregivers because they experience greater stress than parents of healthy children or adolescents [24,38,39]. There is vast scientific literature on the impact of diagnosis and treatment in children or adolescents and the impact on their QoL [8,14,16,23,40,41,42]. However, the literature on parental or caregiver outcome associated with CD treatment is limited [8,16].…”

Accidental Gluten Contamination in Traditional Lunch Meals from Food Services in Brasilia, Brazil

“…The recognition of CD as a public health problem has increased nowadays [25] and, in this context, the assessment of GFF safety in places commonly frequented by the population which are available for CD patients eating outside home must be emphasized. Therefore, this study aimed to evaluate the occurrence of gluten contamination in naturally gluten-free meals from food services in the Federal District, Brazil.…”