Development and evaluation of a dietary application Myproteinguidetm among the caregivers of patients with Disorders of Amino Acid Metabolism (AAMDS)

Abstract

Disorders of amino acid metabolism (AAMDs) are metabolic disorders characterized by the disruption of an amino acid in a metabolic pathway. Individualized dietary intervention is essential in the treatment of AAMDs to reduce the accumulation of toxic metabolites and to achieve good nutritional status. There was no previous attempt to develop a web-based application specifically for AAMD patients in Malaysia. This study aims to develop and evaluate a web-based application: MyProteinGuideTM among caregivers of AAMDs patients aged 6-month-old to 18-year-old. This study consisted of three phases. Phase 1 was started with needs assessment through a mixed-method study in which focus group discussions (n=20) and questionnaire surveys (n=76) among caregivers of AAMDs patients were conducted. Phase 2 initiated the development and validation of the MyProteinGuideTM among the healthcare professionals (n=9) while Phase 3 commenced a cross-sectional study which involved the evaluation of the usability of the web-based application among the caregivers (n=30). The study found factors associated with the barriers and motivators to dietary treatment adherence among the caregiver included knowledge of dietary treatment, eating behaviors, and parenting strategies. For web-based application, features related to dietary monitoring such as a digital food composition database, sharing diet recall with the healthcare providers as well as examples of low protein recipes were among the top anticipated features by the caregivers. MyProteinGuideTM was developed with the self-monitoring components that allow patients to track weight changes, diet intakes and blood parameters as well as offers informative educational contents such as disease information, low protein recipes and food composition database. The overall CVI of the module was 0.983, which was deemed validated for content. The usability evaluation using two questionnaires which are the System Usability Scale (SUS) and mHealth App Usability Questionnaire (MAUQ) showed that the total average mark was 5.88/7.00 and 78.17 respectively, indicating good usability. In conclusion, MyProteinGuideTM was well accepted as an application to assist in self-monitoring AAMD patients' nutritional status. Future work will work on the improvement of the application based on healthcare experts' and caregivers' remarks to optimize its usage among caregivers of AAMD patients.