Exploring the Strategies People with Parkinson's Disease Use to Self-track Symptoms and Medications

Abstract

Self-tracking has great potential in empowering individuals with a chronic illness in managing their condition. Parkinson’s Disease (PD) is a common neurodegenerative disease that affects millions of people worldwide. PD presents a broad range of motor and non-motor symptoms that are unique to each person with PD, thus requiring unique intervention needs for people with PD. Self-tracking can aid treatment for people with PD, by recording their experiences and responses to intervention. We conducted semi-structured interviews with 26 people with PD (PwPD), six caregivers (CGs), and three healthcare providers (HPs) to acquire a better understanding of their experiences with the strategies and challenges of self-tracking. Five tracking strategies were identified: mental tracking, analog tracking, tracking with general-purpose technology, specialized technology tracking, and tracking by proxy. We also uncovered challenges experienced during self-tracking, such as symptoms not always distinctive or easy to describe, inaccuracy of tracking, lack of perceived usefulness of tracked data, interaction barriers with technology, and lack of proper tracking tools. Our findings contribute to existing literature and yield insights to guide the inclusive design of self-tracking tools for PD.