Examining the Psychosocial Well‐Being of Children and Adolescents With Coeliac Disease

Ho, Wing Huen Jamie; Atkinson, Emily L; David, Annabel L

doi:10.1097/mpg.0000000000003652

Cited by 8 publications

(3 citation statements)

References 64 publications

(266 reference statements)

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“…Economic analyses demonstrated high costs, especially at the diagnosis, related to investigations and monitoring of the disease (8,9). Moreover, the non-economic impact of the diet must be considered due to its relevance to psychological and social well-being (10,11). The clinical presentation of CD is heterogeneous.…”

Section: Introductionmentioning

confidence: 99%

Celiac crisis as the life-threatening onset of celiac disease in children: a case report

et al. 2023

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Celiac disease (CD) is an immune-mediated enteropathy caused by a permanent sensitivity to gluten in genetically susceptible individuals. In rare cases, CD may occur with a severe potential life-threatening manifestation known as a celiac crisis (CC). This may be a consequence of a delayed diagnosis and expose patients to possible fatal complications. We report the case of a 22-month-old child admitted to our hospital for a CC characterized by weight loss, vomiting, and diarrhea associated with a malnutrition state. Early identification of symptoms of CC is essential to provide a prompt diagnosis and management.

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Section: Introductionmentioning

confidence: 99%

Celiac crisis as the life-threatening onset of celiac disease in children: a case report

et al. 2023

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“…Nevertheless, a lifelong gluten-free diet (GFD), eliminating all products containing wheat, rye, and barley, remains the only effective treatment for CD. The rigid and limiting GFD is complex and challenging to follow consistently and can negatively impact the quality of and affect social functioning, and adherence is estimated at 45–80% [ 1 , 2 , 18 , 19 ]. Ensuring the regular monitoring of individuals with CD who follow a GFD is crucial for evaluating their response to the diet, identifying any potential complications of CD, detecting associated autoimmune diseases, and pinpointing metabolic changes caused by the GFD [ 16 ].…”

Section: Introductionmentioning

confidence: 99%

Cross-Cultural Participation in Food-Related Activities and Quality of Life among Children with Celiac Disease

et al. 2023

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Children with celiac disease may face challenges in managing a gluten-free diet during their daily interactions and activities. The objective of this study was to compare how children with celiac disease manage their gluten-free diet and participate in food-related activities in Italy and Israel and to assess their quality of life. The previously validated Children’s Activities Report (CD-Chart) and the Disease-specific Health-Related Quality of Life Questionnaire for Children with Celiac Disease (CDDUX) were administered in Italy to children aged 8–16 diagnosed with CD (n = 39). The results were compared to data that had been previously gathered from Israeli children with CD (n = 106). The CD-Chart demonstrated satisfactory internal reliability within each cultural group (Italy: α = 0.82; Israel: α = 0.76). Mann–Whitney U-tests indicated significant differences between the two groups. The Italian children exhibited a significantly higher preference for participating in the activities compared to the Israelis (U = 3283.50, p < 0.001). Nonetheless, the Italian children displayed a notable decrease in their level of involvement in the preparation required before engaging in different activities (U = 760.50, p < 0.001). Moreover, they exhibited significantly lower self-determination in this preparatory process compared to the Israeli children (U = 726.00, p < 0.001). Significant group differences were found between the CDDUX children’s self-reports and parents’ proxy reports in the Israeli group but not in the Italian group. The CD-Chart revealed both shared and distinct participation characteristics in daily food-related activities across different cultural contexts. By incorporating the CD-Chart and the CDDUX, healthcare professionals can emphasize crucial aspects of day-to-day health management and guide them in establishing suitable intervention objectives to enhance effective health self-management.

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“…8. Some CeD patients, especially young adults at diagnosis, have an increasing need for psychosocial counseling [41]. 9.…”

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confidence: 99%

Follow-Up of Celiac Disease in Adults: “When, What, Who, and Where”

et al. 2023

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For patients with celiac disease (CeD), a lifelong gluten-free diet is not a voluntary lifestyle choice—it is a necessity. The key end points in clinical follow-up are symptom resolution, the normalization of weight, prevention of overweight, seroconversion, and negation or minimization of increased long-term morbidity. For the latter, a surrogate endpoint is mucosal healing, which means the normalization of histology to Marsh 0–1. Ideally, celiac follow-up care includes a multidisciplinary approach, effective referral processes, improved access that leverages technological advances, and following guidelines with the identification of measurable quality indicators, ideally informed by evidence-based research. Face-to-face CeD care and telemedicine are considered the standards for this process, although published data are insufficient. Guidelines and statements on diagnosis are readily available. However, data are lacking on optimal clinic visit intervals and outcomes and quality indicators such as improvement of symptoms, function and quality of life, survival and disease control, and how to most effectively use healthcare resources. The results of future research should provide the basis for general recommendations for evidence-based standards of quality of care in CeD.

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Examining the Psychosocial Well‐Being of Children and Adolescents With Coeliac Disease

Cited by 8 publications

References 64 publications

Celiac crisis as the life-threatening onset of celiac disease in children: a case report

Celiac crisis as the life-threatening onset of celiac disease in children: a case report

Cross-Cultural Participation in Food-Related Activities and Quality of Life among Children with Celiac Disease

Follow-Up of Celiac Disease in Adults: “When, What, Who, and Where”

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