Need analysis of a dietary application among caregivers of patients with disorders of amino acid metabolism (AAMDs): A mixed-method approach

Abstract

BackgroundA dietary application can assist the caregivers of AAMDs children in auto-calculating the protein intake, hence improving dietary compliance. However, existing dietary application for patients with AAMDs only focus on delivering the nutritional content of food and monitoring the dietary intake but were lacking in other educational components. ObjectiveTo assess the uses, needs and preferences towards a dietary application among the caregivers of AAMDs patients. MethodsWe conducted a mixed-method study comprising focus group discussion (FGD) and a quantitative questionnaire survey among caregivers of patients aged between 6-month-old to 18-year-old with AAMDs who are receiving active treatment, both medical and dietetic treatment in the genetic clinic, Hospital Kuala Lumpur (HKL). ResultsA total of 76 and 20 caregivers participated in the survey and FGD respectively. All the caregivers (100%) possessed a smartphone and most of the caregivers (89.5%) had the experience of using smartphone or other technological devices to search for health or medical information. However, majority of the participants were not aware of the existence of any web-based or mobile application related to AAMDs (89.5%). While for the qualitative part, three themes emerged: (1) experience with current source of information; (2) needs for supporting self-management educational contents and needs for technological design application. Most of the caregivers used the nutritional booklet as sources of reference but some of them searched for web-based information. Features perceived by the caregivers included a digital food composition database, sharing diet recall with healthcare providers, self-monitoring diet intake as well as low protein recipes. Besides that, user-friendly and ease to use were also perceived as the important features by the caregivers. ConclusionThe identified features and needs by the caregivers should be integrated into the design of the apps to promote acceptance and usage.