Caregiver’s experiences with a mobile-based educational program and its impact on dietary treatment compliance of children with methylmalonic acidemia: an online survey
Abstract Background Compliance 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 t...
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| Format: | Article |
| Language: | English |
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BMC
2025-01-01
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| Series: | Orphanet Journal of Rare Diseases |
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| Online Access: | https://doi.org/10.1186/s13023-025-03528-3 |
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| author | Qing Luo Chunqin Liu Lizhou Lin Xuehua Liu Huifang Chen |
| author_facet | Qing Luo Chunqin Liu Lizhou Lin Xuehua Liu Huifang Chen |
| author_sort | Qing Luo |
| collection | DOAJ |
| description | Abstract Background Compliance 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. Methods A 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. Results Children 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. Conclusion Our 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. |
| format | Article |
| id | doaj-art-c6509282cfb24ee4b5b08a10c1e99486 |
| institution | Kabale University |
| issn | 1750-1172 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | BMC |
| record_format | Article |
| series | Orphanet Journal of Rare Diseases |
| spelling | doaj-art-c6509282cfb24ee4b5b08a10c1e994862025-01-19T12:38:29ZengBMCOrphanet Journal of Rare Diseases1750-11722025-01-0120111010.1186/s13023-025-03528-3Caregiver’s experiences with a mobile-based educational program and its impact on dietary treatment compliance of children with methylmalonic acidemia: an online surveyQing Luo0Chunqin Liu1Lizhou Lin2Xuehua Liu3Huifang Chen4School of Nursing, Guangzhou Medical UniversitySchool of Nursing, Guangzhou Medical UniversityOperating Theatre, The First Affiliated Hospital of Sun Yat-sen UniversityDepartment of Hematology, Shandong Provincial Hospital Affiliated to Shandong First Medical UniversitySchool of Nursing, Guangzhou Medical UniversityAbstract Background Compliance 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. Methods A 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. Results Children 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. Conclusion Our 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.https://doi.org/10.1186/s13023-025-03528-3Methylmalonic acidemiaCaregiversWeChat public accountDietary treatment compliance |
| spellingShingle | Qing Luo Chunqin Liu Lizhou Lin Xuehua Liu Huifang Chen Caregiver’s experiences with a mobile-based educational program and its impact on dietary treatment compliance of children with methylmalonic acidemia: an online survey Orphanet Journal of Rare Diseases Methylmalonic acidemia Caregivers WeChat public account Dietary treatment compliance |
| title | Caregiver’s experiences with a mobile-based educational program and its impact on dietary treatment compliance of children with methylmalonic acidemia: an online survey |
| title_full | Caregiver’s experiences with a mobile-based educational program and its impact on dietary treatment compliance of children with methylmalonic acidemia: an online survey |
| title_fullStr | Caregiver’s experiences with a mobile-based educational program and its impact on dietary treatment compliance of children with methylmalonic acidemia: an online survey |
| title_full_unstemmed | Caregiver’s experiences with a mobile-based educational program and its impact on dietary treatment compliance of children with methylmalonic acidemia: an online survey |
| title_short | Caregiver’s experiences with a mobile-based educational program and its impact on dietary treatment compliance of children with methylmalonic acidemia: an online survey |
| title_sort | caregiver s experiences with a mobile based educational program and its impact on dietary treatment compliance of children with methylmalonic acidemia an online survey |
| topic | Methylmalonic acidemia Caregivers WeChat public account Dietary treatment compliance |
| url | https://doi.org/10.1186/s13023-025-03528-3 |
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