Coping with celiac disease: how heavy is the burden for caregivers?

Ferretti, Francesca; Branchi, Federica; Dell’Osso, Bernardo; Conte, Dario; Elli, Luca

doi:10.17235/reed.2017.4518/2016

Cited by 11 publications

(5 citation statements)

References 32 publications

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“…It is not clear which of these targets should be considered as the primary or secondary endpoint of GFD for CD patients towards their long-term prognosis [6]. Although safe and efficient, GFD is very restrictive, resulting as a burden on social life and quality of life (for both patients and caregivers) [7][8][9][10] and frequently with poor compliance [11][12][13]. Moreover, the clinical response to inadvertent or voluntary gluten ingestion by treated CD patients can be very heterogeneous, ranging from gastroenteritislike pictures to no symptoms [3,14].…”

Section: Introductionmentioning

confidence: 99%

Safety of occasional ingestion of gluten in patients with celiac disease: a real-life study

Elli

Bascuñán

Lernia

et al. 2020

BMC Med

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Background: Gluten-free diet (GFD) decreases the quality of life of celiac disease (CD) patients, who frequently ask to occasionally ingest gluten-containing food. We evaluated CD patients reporting voluntary and occasional transgressions to their GFD. Methods: From October 2017 to September 2018, the patients reporting occasional and voluntary gluten ingestion (GFD-noncompliant) were prospectively enrolled. These patients underwent clinical examination, blood tests, duodenal biopsy, capsule enteroscopy (CE), and a validated food-frequency questionnaire (FFQ) assessing the frequency and quantity of gluten intake. Mortality was calculated and compared to the general population. A group of patients on strict GFD (GFD-adherent) acted as controls. Results: One thousand three hundred seventy-eight CD patients were evaluated during the study period. One hundred nine (8%) reported occasional (weekly or monthly) voluntary ingestion of gluten. The mean gluten intake was 185.2 ± 336.9 g/year, and the duration of their incorrect GFD was 8.6 ± 6.9 years. Among the noncompliant patients, 57% did not present any histological alteration; furthermore, the Marsh score profile was not different between compliant and noncompliant patients. Seventy percent did not present any alteration at CE. Seventy-five percent of patients reported no gastrointestinal symptoms after gluten ingestion. Twenty-three percent of patients in the GFD-noncompliant group presented positive tTG-IgA. No association was found between gluten intake, clinical symptoms, and biomarkers. Mortality was not different between the groups and the general population. Conclusions: Our results are that in a real-life scenario, a group of CD patients on long-term gluten intake showed no significant clinical symptoms or small bowel damage, thus suggesting that a degree of tolerance towards gluten consumption can be reached.

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Section: Introductionmentioning

confidence: 99%

Safety of occasional ingestion of gluten in patients with celiac disease: a real-life study

Elli

Bascuñán

Lernia

et al. 2020

BMC Med

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“…Their quality of life is known to improve once CD cases have been diagnosed and started on a gluten-free diet. 29,30 One review study involving caregivers of individuals with chronic disease emphasized the need for caregivers to be educated about the disease, for health workers to share their treatment plans with the caregiver, and for caregivers to be provided with social and material support and support in terms of coping with the disease. 23 The present study revealed the need for caregivers of pediatric CD cases to receive more evaluation in terms of burden.…”

Section: Discussionmentioning

confidence: 99%

“…The data from the present study show that individuals caring for such cases should also be evaluated in terms of burnout at routine clinical examinations of pediatric CD cases. In a study from Italy, Ferretti et al 29 reported that alarm symptoms (abdominal pain, weight loss, and chronic diarrhea) also exhibited an anxiety-exacerbating effect among caregivers of CD cases. Their quality of life is known to improve once CD cases have been diagnosed and started on a gluten-free diet.…”

Section: Discussionmentioning

confidence: 99%

Evaluation of Burden and Anxiety in Caregivers of Patients with Pediatric Celiac Disease in the COVID-19 Pandemic

et al. 2021

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Background Anxiety and caregiver burden increase among caregivers for individuals with chronic disease. The purpose of this study was to compare the anxiety levels and caregiver burden among caregivers for cases with pediatric celiac disease (CD) before and during the COVID-19 pandemic. Materials The Zarit Burden Interview (ZBI) and the Beck Anxiety Inventory (BAI) were applied to 29 parents caring for pediatric CD patients in January 2020, when COVID-19 cases had not yet been seen in Turkey. The study was designed prospectively. The scales were also reapplied to the same study group online during the COVID-19 pandemic (May 2020). The results were then compared. Results Parents caring for 29 cases of pediatric CD; 21 mothers (72.4%), six fathers (20.7%), and two aunts (6.9%) took part in the study. Mean ZBI scores before and during the COVID-19 pandemic were 27.51 ± 14.12 (8–73) and 38.68 ± 10.95 (21–57), respectively (p < 0.01). Mean BAI scores before and during the COVID-19 pandemic were 13.27 ± 7.65 (1–27) and 23.48 ± 12.40 (2–48), respectively (p < 0.01). Conclusion Increased anxiety and caregiver burden among caregivers of pediatric CD cases during the COVID-19 pandemic were identified for the first time in the literature in this study.

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“…On the other hand, extragastrointestinal manifestations comprise fatigue, anemia, infertility, hepatic disorders, neuropsychiatric symptoms and depression. All in all, CD negatively impacts the quality of welling for CD patients [7] and their caregivers [8].…”

Section: Introductionmentioning

confidence: 99%

Larazotide acetate for treatment of celiac disease: A systematic review and meta-analysis of randomized controlled trials

Hoilat

Altowairqi

Ayas

et al. 2022

Clinics and Research in Hepatology and Gastroenterology

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Coping with celiac disease: how heavy is the burden for caregivers?

Abstract: Background: Celiac disease (CD) is the most common chronic enteropathy demanding a lifelong gluten-free diet.

Cited by 11 publications

References 32 publications

Safety of occasional ingestion of gluten in patients with celiac disease: a real-life study

Safety of occasional ingestion of gluten in patients with celiac disease: a real-life study

Evaluation of Burden and Anxiety in Caregivers of Patients with Pediatric Celiac Disease in the COVID-19 Pandemic

Larazotide acetate for treatment of celiac disease: A systematic review and meta-analysis of randomized controlled trials

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