Health-related quality of life using specific and generic questionnaires in Spanish coeliac children

Barrio, Josefa; Cilleruelo, María Luz; Román, Enriqueta; Fernández, Carmen

doi:10.1186/s12955-020-01494-x

Cited by 9 publications

(8 citation statements)

References 31 publications

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“…4,9,15,[17][18][19][20][21][22] Comparing the CDDUX total scores in children and adolescents, QoL appears to be neutral in Spanish, Dutch and Brazilian children with CD, while a good perception of QoL is found in Chileans, and a poor QoL is reported for Iranians and Moroccans. 5,9,17,[19][20][21][22] A similar comparison with the PedsQL in our study gave results comparable to those of Italian children with rheumatological diseases, 23 healthy children, 24 Argentinean and Canadian children with CD. 12,15 It is notable that compared to CDDUX scores of our study, the Argentinians reported higher scores (good), while Canadians scores were lower (low/neutral range).…”

Section: Discussionsupporting

confidence: 85%

“…Nonadherence may be associated with reduced patient growth, symptoms, and poorer quality of life (QoL) 2,3 . The need to follow a strict, restrictive, and permanent diet in coeliac patients may cause stigma and have a considerable negative impact on the health‐related QoL (HRQoL) of patients and their families 4,5 …”

Section: Introductionmentioning

confidence: 99%

“…2,3 The need to follow a strict, restrictive, and permanent diet in coeliac patients may cause stigma and have a considerable negative impact on the health-related QoL (HRQoL) of patients and their families. 4,5 Several clinical and psychosocial factors may influence the QoL of CD patients, and indirectly reduce adherence to a GFD. 6 An example are the restrictions applied to limit SARS-CoV-2 infection during the recent COVID-19 pandemic, a condition which most likely influenced QoL and GFD adherence, although data on this topic is still scarce and controversial.…”

Section: Introductionmentioning

confidence: 99%

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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.

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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.

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Section: Discussionsupporting

confidence: 85%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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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.

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“…The health-related QOL for Saudi CD children on GFD was generally comparable to the healthy control, except for the general health domain [ 25 ]. A CD children study from Spanish revealed the main concerns of the respondents to the social and economic difficulties of GFD [ 26 ]. In Sweden, there was no clear relationship between CD and socioeconomic place [ 27 ].…”

Section: Suggested Causes For the Recent Increase In CD Incidencementioning

confidence: 99%

Celiac disease in the COVID-19 pandemic

Samaşcă¹,

Lerner²

2021

Journal of Translational Autoimmunity

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Background The COVID-19 pandemic has had an impact on global health. Design The impact of the COVID-19 pandemic on patients with coeliac disease was assessed in the present review. Results The incidence of coeliac disease and the problems associated with coeliac disease increased during the COVID-19 pandemic. Adherence to the diet is crucial for the patient's health and quality of life since the only approved therapy for coeliac disease is a gluten withdrawal. Conclusions A gluten-free diet should be promoted by the therapeutic team and implemented among these categories of patients.

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“…There are two main types, generic and specific questionnaires. Generic questionnaires measure the daily life aspects of HRQoL in patients who have several conditions, whereas specific questionnaires focus on specific aspects related to the disease and its treatment ( 11 ). Generic self-administered questionnaires are mostly used as indicators for HRQoL, including the EuroQol 5-Dimensions (EQ–5D) and Short Form-36 Health Survey (SF-36) ( 12 , 13 ).…”

Section: Introductionmentioning

confidence: 99%

Quality of Life in Teenagers and Adults With Coeliac Disease: From Newly Spanish Coeliac Disease Questionnaire Validation to Assessment in a Population-Based Study

2022

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BackgroundCoeliac disease (CD) is an immune-mediated systemic disorder elicited by the ingestion of gluten in genetically predisposed individuals. Gluten restriction in CD sufferers leads to numerous limitations in various aspects of daily life and can significantly impact the quality-of-life (QoL). The specific and widely used Coeliac Disease Questionnaire (CDQ) is an excellent tool to evaluate QoL in patients with CD, assessing physical, psychological, and social domains. This questionnaire is unavailable in Spain. Therefore, our study is the first to translate, culturally adapt, validate, and apply the Spanish version of CDQ to a representative sample of Spanish teenagers and adults with CD.MethodsA total of 153 CD participants with biopsy-proven and self-reported gluten-free adherence were included in the cross-sectional study, which included four stages: (1) translation and retranslation of the French CDQ version into Spanish; (2) cultural adaptation and semantic evaluation; (3) CDQ validation through the internal consistency determination and reproducibility of the QoL; and (4) application of the questionnaire to Spanish teenagers and adults with CD and estimation of QoL using EQ-5D.ResultsThe internal consistency and test–retest reliability of the Spanish CDQ were satisfactory and no ceiling or floor effects were detected. Significant correlations were identified between the CDQ scales, and the instrument for validation covering similar dimensions of the QoL was identified. The mean CDQ total score was 131.03 ± 24.1, and the social domain had the highest rating. There was no correlation between the time spent on a gluten-free diet and QoL. A significantly higher QoL score was reported among males and adolescents in the 15–17 age groups.ConclusionThe newly Spanish CDQ is an appropriate tool to assess the QoL of the teenager and adult patients with CD. This study highlights the importance of identifying the affected scales to address actions to reduce the impact of the gluten-free diet burden of the coeliac patients and maintain public health regulations that support patients with chronic diseases such as CD.

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Health-related quality of life using specific and generic questionnaires in Spanish coeliac children

Cited by 9 publications

References 31 publications

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

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

Celiac disease in the COVID-19 pandemic

Quality of Life in Teenagers and Adults With Coeliac Disease: From Newly Spanish Coeliac Disease Questionnaire Validation to Assessment in a Population-Based Study

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