ArticleOrphanet journal of rare diseases2025
Caregiver's experiences with a mobile-based educational program and its impact on dietary treatment compliance of children with methylmalonic acidemia: an online survey.
Article in Orphanet journal of rare diseases, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundCompliance to highly restrictive diets is critical for children with Methylmalonic Acidemia (MMA), and their caregivers play a prominent role in children's dietary treatment from early childhood through to adulthood. Despite lots of efforts by the multidisciplinary medical team to ensure the smooth implementation of dietary treatment, restricting dietary protein remains particularly challenging for children with MMA. This study aimed to assess dietary treatment compliance in children with MMA and evaluate the impact of WeChat-based parent education on compliance.
methodsA sample of 151 caregiver-child dyads was obtained through online recruitment using convenience sampling from February to March 2023. At least one month following the enrollment of MMA caregivers in the WeChat public account "Methylmalonic Acidemia Diet Manager", structured questionnaires were distributed to them through the electronic platform "Questionnaire Star" in collaboration with the Chinese National Alliance of Rare Diseases. Subsequently, the collected data was analyzed using quantitative methods.
resultsChildren with MMA aged over 5 years were more likely to present a lower level of dietary treatment compliance compared to those under 1 year old. Besides, the levels of children's dietary treatment compliance were higher when their caregivers had higher levels of satisfaction and benefit from using the public account.
conclusionOur findings highlighted the significance of age-related challenges in dietary treatment compliance among children with MMA and the promising impact of utilizing WeChat public accounts as a supportive education tool.
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