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Abstract Introduction Although Parkinson’s Disease is the second most common neurodegenerative disease, the lived experience of individuals with early-stage Parkinson’s has not received much attention. This study sought to understand how the spectrum of severity is described and perceived by this population using the Patient-Global Impressions of Severity scale. Additionally, early-stage Parkinson’s patients described what symptoms and quality of life impacts were most important to the early stages of the Parkinson’s experience. Methods In this study, 17 participants with early-stage Parkinson’s (1-2.5 on the modified Hoehn and Yahr scale) were interviewed about their experience with Parkinson’s as well as cognitively debriefed on the Patient Global Impressions of Severity scale. Analysis was performed using NVivo 13 a qualitative analysis software. Results Most participants reported tremors as their most bothersome symptom and the impact to their daily lives was most disruptive. Nearly every participant spoke about the emotional burden of their Parkinson’s diagnosis. Contemplating the future of their disease had a significant impact, which several said caused them to experience anxiety and/or depression. Participants were also able to describe the spectrum of severity for Parkinson’s and its quality of life impact, including severity levels they have not yet reached, using the global severity scale. Discussion This study highlights that even at the early stages of the disease, individuals living with Parkinson’s experience a wide range of symptoms and related quality of life impacts which shape their daily experience and contribute to perceptions of severity.
Williams et al. (Wed,) studied this question.