Health‐Related Quality of Life in Spanish Children With Coeliac Disease

Barrio, Josefa; Román, Enriqueta; Cilleruelo, MaLuz; Márquez, Manuela Soto; Mearin, M. L.; Fernández, Carmen

doi:10.1097/mpg.0000000000000963

Cited by 37 publications

(53 citation statements)

References 41 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…In our study, children and adolscents with celiac disease and their parents gave similar answers in the pediatric questionnaire about quality of life (PedsQL), so all observed scores statistically were homogeneous. Our results are consistent with the results of European studies in which the evaluation of self-assessment of the quality of life of children and adolescents with celiac disease and assessment of their parents shows that the disease does not have significant negative impact on quality of life [16]. Unlike our results, other studies have found that parents have significantly poorer perception of health related quality of life of their children than the children themselves [15,17].…”

Section: Resultssupporting

confidence: 92%

Self-assessment and parental assessment of quality of life children with coeliac disease

Stojanović-Jovanović¹,

Vuletic²,

Jovanović³

2019

Timočki medicinski glasnik

View full text Add to dashboard Cite

Background: Celiac disease is a chronic autoimmune disease characterized by intolerance to gluten. Treatment is carried out by strict lifelong gluten-free diet. Study aims to determine the quality of life children and adolescents with celiac disease who are on controlled diet, based on self-assessment and proxy assessment by their parents. Methods: The study included 116 children and adolescents diagnosed with celiac disease who are on a gluten free diet for at least one year and the same number of their parents. The children were aged 5 to 18 years. The patients and their parents were recruited at the Institute for Maternal and Childs healthcare of Serbia and the University Children's Hospital in Belgrade. The used instruments were a child and parent version of the Pediatric Quality of Life Inventory and the Screen for Child Anxiety Related Disorder. Results: The results in both versions of the questionnaires Pediatric Quality of Life Inventory showed similar values. (P> 0.05, all analyzes). There was a greater value of three scores in instrument named Screen for Child Anxiety Related Disorder (questionnaire for children) compared to (questionnaire for parents). These are the total score (p<0.05), separation anxiety (p<0.01) and the avoidance of the school (p<0.05). Conclusions: Disagreement between the children's selfassessment and parental assessment, justifies the importance of hearing subjective children's opinion on their quality of life as well as of their parents. This research has given us information about some of the critical points by which we can focus future studies.

show abstract

Section: Resultssupporting

confidence: 92%

Self-assessment and parental assessment of quality of life children with coeliac disease

Stojanović-Jovanović¹,

Vuletic²,

Jovanović³

2019

Timočki medicinski glasnik

View full text Add to dashboard Cite

show abstract

“…Children and adolescents with CD aged two to 18 years old and/or their parents participated in the studies. In 14 of the 23 articles children and/or adolescents and their parents participated [ 13 , 16 , 18 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 ], in seven studies children and/or adolescents participated [ 35 , 36 , 37 , 38 , 39 ], and in one article only parents participated [ 40 ] ( Table 1 ).…”

Section: Resultsmentioning

confidence: 99%

“…The 23 articles included five main objectives, as follows: (1) Twelve articles involved assessment of QOL [ 13 , 16 , 19 , 26 , 29 , 31 , 32 , 33 , 35 , 36 , 37 , 42 ]; (2) Seven articles were associated with adherence to the GFD [ 28 , 35 , 36 , 39 , 41 ]; (3) Six articles were associated with the impact of a GFD on daily life [ 18 , 27 , 33 , 38 , 43 ]; (4) Five of the 23 articles were related to the impact of CD on the family or parents [ 25 , 29 , 38 , 39 , 40 ]; and (5) Five of the articles explored the relationships of QOL and adherence [ 13 , 28 , 35 , 36 , 41 ].…”

Section: Resultsmentioning

confidence: 99%

“…A range of disease-specific questionnaires in which the food-related activities identified were developed, implemented or validated. The celiac disease DUX (CDDUX), a disease-specific health-related quality-of-life questionnaire for children with CD, developed in The Netherlands to assess both self-report and parental report of health-related QOL [ 16 ], has been translated and is in use in four additional countries [ 13 , 26 , 31 , 42 ]. Six of the articles used self-report questionnaires developed specifically for the purpose of the study [ 28 , 30 , 36 , 37 , 39 ].…”

Section: Resultsmentioning

confidence: 99%

“…Seven of the articles used frequency ratings of avoidance, difficulty, and negative feelings, such as anger and embarrassment [ 19 , 27 , 28 , 30 , 35 , 37 , 39 ]. Five articles, which utilized the same questionnaire, used a scale that rated feelings concerning CD on a scale of a very good to a very bad feeling [ 13 , 16 , 26 , 31 , 42 ]. One article used a non-disease-specific questionnaire that rated QOL on a scale of very unhappy to very happy [ 29 ].…”

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

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

Meyer

Rosenblum

2017

Nutrients

View full text Add to dashboard Cite

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.

show abstract

Health‐related quality of life in children with coeliac disease and in their families: A long‐term follow‐up study

Crocco,

Malerba,

Calvi

et al. 2023

J. pediatr. gastroenterol. nutr.

View full text Add to dashboard Cite

ObjectivesThe aim of the study was to assess long‐term health‐related quality of life (HRQoL) in children and adolescents with coeliac disease (CD), and their parents.MethodsWe re‐evaluated prospectively the HRQoL and clinical characteristics of 80 families, assessed 5 years earlier, using a disease‐specific questionnaire, the CD Dutch Questionnaire (CDDUX), and a generic questionnaire, the Paediatric Quality of Life Inventory (PedsQL).ResultsAfter a 10‐year follow‐up, there was no significant change in the total CDDUX and PedsQL scores in children and their parents when compared to the evaluation conducted 5 years earlier. The total CDDUX score reflected a neutral QoL, while for the generic PedsQL was good‐very good. The only significant decrease after 5 years was the PedsQL subdomain Emotional functioning. Patients who admitted voluntarily eating gluten reported lower score in CDDUX Diet. Lower scores in subdomain “Physical functioning” (PedsQL) were reported in patients with positivity of TTG or associated diseases.ConclusionsThe CDDUX score indicated a consistently stable and neutral QoL perception among coeliac patients and caregivers, even after 10‐year postdiagnosis, suggesting minimal fluctuations in the impact of CD on disease‐specific health domains over time. Furthermore, the consistently good PedsQL score could be a reflection of the resilience of coeliac families in coping with this chronic condition. Gluten‐free diet compliance was confirmed to be determinant of HRQoL in the long term. The study confirms the importance of extending surveillance on these patients, possibly using different questionnaires, to assess QoL from different perspectives.

show abstract

Health‐Related Quality of Life in Spanish Children With Coeliac Disease

Abstract: The CDDUX questionnaire emerged as reliable for use in Spanish children with celiac disease. Overall, both children and parents felt the disease had no substantial negative impacts on patient HRQOL.

Cited by 37 publications

References 41 publications

Self-assessment and parental assessment of quality of life children with coeliac disease

Self-assessment and parental assessment of quality of life children with coeliac disease

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

Health‐related quality of life in children with coeliac disease and in their families: A long‐term follow‐up study

Contact Info

Product

Resources

About