Health-related quality of life in children and adolescents with celiac disease: patient-driven data from focus group interviews

Abstract

Children and adolescents showed large diversity in how much impact CD has on their HRQOL. Different ways of coping with CD and GFD were identified. Findings will be used to generate a patient-driven disease-specific questionnaire to measure HRQOL in children and adolescents with CD.

Quality of life in children with celiac disease: A paediatric cross-sectional study

“…These dilemmas are related to difficulties in social relationships and management of daily life in order to adhere to the GFD [23]. Also children with CD experience similar difficulties, as described in recent studies [13,24]. We also found that presence of co-morbidities negatively affected QOL, in particular the Psycho-Social Health and Total Scores.…”

Coeliac disease and the gluten‐free diet: a review of the burdens; factors associated with adherence and impact on health‐related quality of life, with specific focus on adolescence

“…Recent focus group interviews with 8–18 year olds ( n = 23) from Denmark revealed stressors similar to those identified by Olsson et al . and Biagetti et al .…”

“…Recent focus group interviews with 8-18 year olds (n = 23) from Denmark (28) revealed stressors similar to those identified by Olsson et al (24) and Biagetti et al (26) . Participants experienced negative reactions from peers if it was felt they were given preferential treatment as a result of having CD.…”

Experiencing health‐related quality of life in paediatric short stature – a cross‐cultural analysis of statements from patients and parents

“…Topics that have emerged from qualitative analyses include body image and self-esteem (Chang et al, 2016), as well as emotional impact, thoughts about future, and coping with social situations (Skjerning, Mahon, Husby, & DunnGalvin, 2014). If we assume that the focus groups were able to collect the full range of experiences of short stature in each country, then differences in the number of statement categories could be a sign of differences in experience between countries.…”

“…Socioemotional issues play an important role in children with chronic conditions, as suggested by studies that used focus groups to assess HrQoL in children with chronic conditions like celiac disease or neonatal brachial plexus palsy (Chang et al, ). Topics that have emerged from qualitative analyses include body image and self‐esteem (Chang et al, ), as well as emotional impact, thoughts about future, and coping with social situations (Skjerning, Mahon, Husby, & DunnGalvin, ). If we assume that the focus groups were able to collect the full range of experiences of short stature in each country, then differences in the number of statement categories could be a sign of differences in experience between countries.…”