Online education for gluten‐free diet teaching: Development and usability testing of an e‐learning module for children with concurrent celiac disease and type 1 diabetes

Connan, Veronik; Marcon, Margaret; Mahmud, Farid H; Assor, Esther; Martincevic, Inez; Bandsma, Robert; Vresk, Laura; Walsh, Catharine M.

doi:10.1111/pedi.12815

Cited by 30 publications

(42 citation statements)

References 56 publications

(105 reference statements)

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“…Use of unexplained medical jargon with families and patients is still common in the paediatric field [17] although it has been shown that information, which can be processed fluently, is considered more trustworthy, honest and safe and that the recipient is more inclined and likely to fulfil inferred tasks [5]. Processing fluency depends mainly on perceptive fluency, determined by visual display and linguistic fluency, which depends on wording and grammatical complexity.…”

Section: Discussionmentioning

confidence: 99%

“…It is known that in patients with chronic diseases effective health education does not only improve knowledge, but also supports adherence to treatment and successful self-management, by influencing the patients’ attitude and daily practice [17, 18]. All these factors are essential for optimal outcome in patients with IEM [5, 7].…”

Section: Discussionmentioning

confidence: 99%

“…Medical jargon and incomprehensive disease information constitute a barrier to informed and shared decision-making [17]. Over 80% of the study participants indicated that they liked the materials and appreciated them as an indicator of a respectful approach of care.…”

Section: Discussionmentioning

confidence: 99%

See 2 more Smart Citations

Reducing complexity: explaining inborn errors of metabolism and their treatment to children and adolescents

Zeltner

Welsink‐Karssies

Landolt

et al. 2019

Orphanet J Rare Dis

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BackgroundInborn errors of metabolism (IEM) are a group of rare, heterogeneous and complex genetic conditions. Clinically, IEM often affect the central nervous system and other organs. Some carry the risk of progression and / or potentially life-threatening crises. Many patients have to adhere to lifelong dietary or drug treatment.The complexity of IEM makes it difficult for patients and caregivers to understand their pathophysiology, inheritance and therapy rationale. Especially patients reaching adolescence may have only limited knowledge of their condition since medical care has often entirely been handled by their parents. Knowledge about disease and treatment, however, constitute pillars of self-responsible disease management. Not many standardized patient education materials on IEM are available and their comprehensibility has not been systematically investigated.MethodsWe developed and tested patient education materials for school-aged children and adolescents with IEM. Informative texts and illustrations in paper form and as videos were developed by an international network of metabolic care professionals together with a graphic artist and experts for easy-to-read language. The materials were presented in standardized single or group training sessions to 111 individuals; first, to 74 healthy children and adolescents (recruited via public schools) and consecutively to 37 paediatric patients with IEM (phenylketonuria, galactosemia, urea cycle defects, lysosomal storage disorders) from six metabolic centres. Knowledge-gain was assessed by pre- and post-testing.ResultsKnowledge-gain was significant in healthy children and adolescents as well as in patients (p < .001, r =. -77 /. -70). Effect sizes were large in both groups (r = -.77 / -.70). This result was independent from family language and teacher-rated concentration or cognitive capacity in healthy children.ConclusionThe newly developed patient education materials are a powerful tool to improve disease- and treatment-related knowledge. They facilitate communication between the medical team and children and adolescents with IEM and their caregivers.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Reducing complexity: explaining inborn errors of metabolism and their treatment to children and adolescents

Zeltner

Welsink‐Karssies

Landolt

et al. 2019

Orphanet J Rare Dis

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“…A mixed-methods feasibility testing approach will be used with iterative cycles of testing the developed intervention. 25,26 A satisfaction scale, semi-structured interview, feasibility and observation checklist will be used to assess the feasibility and usability of the education module in real-world settings.…”

Section: Feasibility Evaluation: Mixed-methods Studymentioning

confidence: 99%

Development and evaluation of a culturally tailored education module for type 1 diabetes in a resource-constrained setting: protocol for a mixed-methods study

et al. 2021

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Background: Diabetes education is the key to successful diabetes management. There is a need for an education module for type 1 diabetes (T1D) that is culture-specific and suited to resource constraints.Methods: A mixed-methods study will be conducted, in three phases, to develop and evaluate a culturally tailored diabetes education module for Indian children with T1D and their families. During the first phase, a qualitative study among health professionals and families of children with T1D for need assessment will be conducted. During the second phase, based on the themes from the last phase, an educational module will be developed. The third phase will involve an evaluation of the content, feasibility and effectiveness of the proposed module. The content evaluation will be done using the standardized 'suitability assessment of materials' checklist. For feasibility, a mixed-method approach will be used with iterative cycles of satisfaction scale, semi-structured interview and feasibility and observation checklist. The module will be revised after each cycle till no new changes are suggested. The effectiveness will be assessed by a quasi-experimental controlled trial assessing glycemic control, health-related quality of life, clinically important events and self-management practices in T1D children at baseline and three and six months.Conclusions: This study aims at development and validation of a novel culturally tailored diabetes education module for children with T1D, suited to their resource constraints. A module designed with the inputs from all stakeholders, and evaluated using iterative cycles, has the potential to suit the dynamic nature of diabetes management in children.Trial registration: Trial registration number is CTRI/2021/04/032739.

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“…So, different methods were studied to overcome these limitations. In this regard, various online education programs have been designed and applied in the adult 4 and children celiac patients 5 and their positive effect has been reported. However, this method needs internet access.…”

Section: Introductionmentioning

confidence: 99%

Smartphone application for celiac patients: assessing its effect on gastrointestinal symptoms in a randomized controlled clinical trial

Nikniaz

Shirmohammadi

Maserrat

et al. 2020

Preprint

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Background: We aimed to study the effectiveness of a “celiac” smartphone application on gastrointestinal symptoms in celiac patients. Methods: In the present randomized controlled clinical trial, 60 celiac patients were randomly assigned to receive education through a smartphone application (n=30) or conventional clinical education (n=30). We assessed the gastrointestinal symptoms using the gastrointestinal symptom rating scale (GSRS) questionnaire at baseline and three months after interventions. The GSRS total score, celiac disease GSRS (CD-GSRS) score, abdominal pain, reflux, diarrhea, constipation, and indigestion scores were calculated. Results: Out of 60 randomized patients, 58 patients completed the study. In comparison to baseline, the mean score of GSRS total score (p=0.04), CD-GSRS score (p=0.001), and indigestion subscore (p<0.001) were significantly decreased in the intervention group. In the control group, compared to baseline, the mean scores of CD-GSRS score (p=0.03) and abdominal pain subscore (p=0.04) were significantly reduced; and the mean score of reflux (p=0.01) subscore was significantly increased. The results of the between-group comparisons showed that although the mean GSRS and CD-GSRS total scores were lower in the intervention group compared with the control group, the differences were not statistically significant. In terms of GSRS subscores, there was a significant difference between the two groups only in the mean score of indigestion (P=0.01).Conclusion: According to the results, smartphone application had a significantly positive effect on indigestion symptoms compared with routine clinic education. However, more large studies with longer duration of the follow-up period are needed to assure this approach Trial registration: The protocol of the study was registered in the Iranian registry of clinical trials (IRCT code: IRCT20170117032004N2). trial registry webpage: : https://www.irct.ir/user/trial/40187/view. Trial registry date: 2019.6.26

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Online education for gluten‐free diet teaching: Development and usability testing of an e‐learning module for children with concurrent celiac disease and type 1 diabetes

Cited by 30 publications

References 56 publications

Reducing complexity: explaining inborn errors of metabolism and their treatment to children and adolescents

Reducing complexity: explaining inborn errors of metabolism and their treatment to children and adolescents

Development and evaluation of a culturally tailored education module for type 1 diabetes in a resource-constrained setting: protocol for a mixed-methods study

Smartphone application for celiac patients: assessing its effect on gastrointestinal symptoms in a randomized controlled clinical trial

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