Self-Management Tasks of Adult Patients with Phenylketonuria: Needs Assessment for a Food Tracking Application

Abstract

Phenylketonuria (PKU) is a lifelong condition resulting from impaired metabolism of the amino acid phenylalanine (Phe). To avoid neurological damage, patients must adhere to a low-Phe diet that severely limits natural foods. Due to the complicated nature of the diet, this study aimed to identify the self-management tasks performed by adults with PKU and assess the need for a technological solution to aid diet maintenance. Participants were recruited via Facebook for semi-structured interviews conducted remotely with two investigators. Eligible individuals were adults 18 years or older diagnosed with PKU. The eight interviewees consisted of two males and six females between the ages of 23 to 40 years located in the US, UK, and Canada. Interviews were transcribed and coded for common themes under the categories of illness-related, articulation, everyday life, biographical, sentimental, and technology work. General interview themes demonstrated a desire for the development of PKU specific mobile health applications.