Health-related quality of life in children with celiac disease

doi:10.1067/mpd.2001.111504

The Journal of Pediatrics

Volume 138, Issue 4, April 2001, Pages 593-595

https://doi.org/10.1067/mpd.2001.111504 Get rights and content

Abstract

We have investigated the health-related quality of life of children with celiac disease (n = 133) using two generic and one disease-specific questionnaires. In general, the children reported an adequate quality of life, similar to that of the reference sample (n = 1183). (J Pediatr 2001;138:593-5)

Section snippets

Methods

The Dutch Celiac Patients Society invited 317 children aged 8 to 16 years and their parents to participate in this study. After informed consent was obtained, 202 children and their parents (64%) completed and returned the HRQOL questionnaires. The report of CD was checked by the Dutch Network and National Database of Pathology, which anonymously records findings from all small bowel biopsies performed in the Netherlands.⁴ CD was confirmed in 133 children aged 8 to 11 years (n = 92, 41 boys)

TACQOL

The children with CD aged 8 to 11 years reported a QOL similar to that of the reference sample with exception of 2 scales (P < .05) (Figure).

Figure. Differences (P < .05) in QOL measured by means of the TACQOL as reported by children aged 8 to 11 years with celiac disease (CD) , their parents, and by the reference sample (RS) .

Adolescents did not report significant differences. When the reports on HRQOL from the children with CD and their parents were compared at group level, only the children

Discussion

In general, the HRQOL in children with CD is similar to that of the children in the general population. Children with CD aged 8 to 11 years are slightly less satisfied with their motor and social functioning compared with the children of the reference sample but still report rather high scores for these domains. Compared with the reference sample, adolescents with CD were slightly less satisfied with their social, emotional, and physical functioning. However, we must take into account that the

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Adults newly diagnosed with CeD and residents in the Veneto region were included. Their sociodemographic characteristics, clinical presentation, mode of diagnosis, duration of symptoms before diagnosis and comorbidities were recorded. All patients completed the Beck Depression Inventory (BDI), State-Trait Anxiety Inventory (STAI) and Short Form Health Survey (SF-36) questionnaires.
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Assessment of quality of life in children, adolescents, and adults with celiac disease through specific questionnaires: Review
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Other versions have been used such as the Psychological General Well-Being (PGWB) [21], Dutch Children Quality of Life Questionnaire Short Form (DUX-25) [22] and KIDSCREEN-52 questionnaire [23]. Other generic questionnaires were used in some studies [24–27]. These generic instruments can provide a global vision of QoL in patients with celiac disease.
The gluten-free diet (GFD) is a lifelong treatment for celiac patients which affects the quality of their life (QoL). This was evaluated by generic methods. Over time, specific instruments for celiac disease (CD) have been developed. The objective of this review is to identify the different CD-specific instruments that have estimated QoL in celiac patients, study their psychometric properties, and highlight the factors influencing the final scores.
An advanced database search (PubMed, Web of science, etc.) was launched in order to identify articles that evaluated QoL in children, adolescents, and adults with celiac disease. The items and subscales of each questionnaire were determined with the comparison of psychometric properties (Internal consistency, Reproductibility, Acceptance, Floor effect, Ceiling effect, Convergent validity, Construct validity and Discriminative validity).
Eighteen specific instruments have been identified. The assessment of QoL in celiac patients by these specific instruments allowed detecting the influence of specific characteristics related to CD on QoL. The developed and validated instruments showed acceptable psychometric properties in different countries. The obtained results showed that the QoL related to CD is reduced. However, monitoring GFD helps improving these scores.
CD-specific instruments are increasing considerably. They contain relevant items that can properly assess the QoL in patients with celiac disease.
Le régime sans gluten (GFD) est un traitement à vie destiné aux personnes atteints de la maladie cœliaque (CD). Il influence leur qualité de vie (QoL). Cette dernière a été évaluée par des méthodes génériques. Au fil du temps, des instruments spécifiques à la maladie cœliaque ont été développés. L’objectif de cette étude a été d’identifier les différents instruments spécifiques à la CD qui ont permis d’estimer la qualité de vie, d’étudier leurs propriétés psychométriques et de mettre en évidence les facteurs qui influencent les scores finaux.
Des recherches avancées dans les bases de données (PubMed, Web of science, etc.) ont été lancées pour identifier les articles évaluant la qualité de vie chez les enfants, les adolescents et les adultes atteints de la maladie cœliaque. Tout d’abord, les éléments et les sous-ensembles de chaque questionnaire ont été déterminés. Ensuite, les propriétés psychométriques (cohérence interne, validité, etc.) de chaque questionnaire ont été comparées.
Dix-huit instruments spécifiques ont été identifiés. L’évaluation de la qualité de vie chez les patients cœliaques à l’aide de ces instruments spécifiques a permis de détecter l’influence des caractéristiques spécifiques liées à la maladie cœliaque sur la qualité de vie. Les instruments développés et adaptés ont montré des propriétés psychométriques acceptables dans les différents pays. Les résultats ont montré aussi que la qualité de vie liée au CD est médiocre. Cependant, le suivi du GFD a contribué à l’amélioration de ces scores.
Les instruments spécifiques aux CD augmentent considérablement. Les faibles scores obtenus nécessitent de mettre en évidence les facteurs nécessaires à l’amélioration de la qualité de vie, notamment d’avoir une bonne adhésion au GFD.
Meta-analysis of quality of life in children and adolescents with ADHD: By both parent proxy-report and child self-report using PedsQL™
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Discrepancies between child and parent perceptions may be related to critical characteristics of child, parent and family functioning (Kolsteren, Koopman, & Schalekamp, 2001). Parental perception may be influenced by the development of other children (e.g., their own or those of their friends), their expectations and concerns for the child, the burden of care-giving, their own mental health and well-being (Eiser & Morse, 2001; Kolsteren et al., 2001), and family functioning (Varni, Seid, & Kurtin, 2001). In addition, children with ADHD have been found to report their performance more positively compared to criteria reflecting actual competence (Owens, Goldfine, Evangelista, Hoza, & Kaiser, 2007).
Attention deficit hyperactivity disorder (ADHD) is a prevalent developmental disorder that seriously and negatively impacts a child's health-related quality of life (HRQOL). However, no meta-analysis has been conducted to examine the magnitude of impact, domains affected and factors moderating the impact. This review included nine studies that compared HRQOL of children or adolescents with ADHD with those with typical development using both child self-reports and parent proxy-reports. Seven among nine studies were meta-analytically synthesized to examine the degree of impact of ADHD on children and adolescents, parent–child discrepancy, and the moderators. The results indicate that ADHD impact a child's or adolescent's HRQOL negatively with a moderate effect in physical and a severe effect in psychosocial (i.e., emotional, social, and school) domains. Parental ratings of overall HRQOL in children or adolescents with ADHD were not significantly different from child's ratings when compared with typically developing children and adolescents. Age was negatively associated with all domains of HRQOL in children and adolescents with ADHD both by parent- and child-ratings, and the strongest effect was found in parental ratings of child's emotional HRQOL, with a moderate correlation. This meta-analysis suggests that HRQOL may be assessed in children and adolescents with ADHD both by parent proxy- and child self-reports, and that interventions may be planned accordingly. Future meta-analysis may explore how measures of HRQOL and other factors including child, parental, familiar and school characteristics influence the impact of ADHD and the parent–child agreement in children and adolescents.
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^☆: Reprint requests: M. Luisa Mearin, MD, PhD, Department of Pediatrics, Leiden University Medical Center, PO Box 9600, 2300 RC Leiden, The Netherlands.

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Clinical and Laboratory ObservationsHealth-related quality of life in children with celiac disease☆

Abstract

Section snippets

Methods

TACQOL

Discussion

Lancet

Constitution of the World Health Organization

Quality of life of adult coeliac patients treated for 10 years

Scand J Gastroenterol

Measuring quality of life in coeliac disease patients

Clinical and Laboratory Observations
Health-related quality of life in children with celiac disease☆