Date of Original Version
Background: Patient perspectives on meaningful symptoms and impacts in early Parkinson’s disease (PD) is lacking, and is urgently needed to clarify priority areas for monitoring, management, and new therapies.
Objective: To examine experiences of people with early-stage PD, systematically describe meaningful symptoms and impacts, and determine which are most bothersome or important.
Methods: Forty adults with early PD (≤ 2 years diagnosis) who participated in a study evaluating smartwatch and smartphone digital measures (WATCH-PD study) completed online interviews with symptom mapping to hierarchically delineate symptoms and impacts of disease from “Most bothersome” to “Not present,” and to identify which of these were viewed as most important and why. Individual symptom maps were coded for types, frequencies, and bothersomeness of symptoms and their impacts, with thematic analysis of narratives to explore perceptions.
Results: The three most bothersome and important symptoms were tremor, fine motor difficulties, and slow movements. Symptoms most commonly impacted sleep, job functioning, exercise, communication, relationships, and self-concept—expressed as a sense of being limited by PD. Thematically, most bothersome symptoms were those that were personally limiting with broadest negative impact on well-being and activities. However, symptoms could be important to patients even when not present, bothersome, or limiting (e.g., speech, cognition).
Conclusion: Meaningful symptoms of early PD can include symptoms that are present or anticipated future symptoms that are important to the individual. Systematic assessment of meaningful symptoms should aim to assess the extent to which symptoms are personally important, present, bothersome, and limiting.
Mammen, J. et al (2022). Relative meaningfulness and impacts of symptoms in people with early-stage Parkinson’s disease. (Preprint manuscript). Retrieved from https://digitalcommons.uri.edu/nursing_facpubs/.
Related manuscripts in this collection:
1. (METHODS) Mammen, J.R., Speck, R., Stebbins, G., Müller, M., Yang, P., Campbell, M., . . . Adams, J.L. (2022). Mapping meaningful symptoms and impacts of disease to digital outcome measures. (Preprint). Retrieved from https://digitalcommons.uri.edu/nursing_facpubs/343/
2. (RESULTS) Mammen, J.R., Speck, R., Stebbins, G., Müller, M., Yang, P., Campbell, M., . . . Adams, J.L. (2022). Relative meaningfulness and impacts of symptoms in people with early-stage Parkinson’s disease. (Preprint). Retrieved from https://digitalcommons.uri.edu/nursing_facpubs/344/
3. (RESULTS) Mammen, J.R., Speck, R., Stebbins, G., Müller, M., Yang, P., Campbell, M., . . . Adams, J.L. (2022). Relevance of digital health technologies to people with early Parkinson’s for monitoring meaningful symptoms in the WATCH-PD study. (Preprint). Retrieved from https://digitalcommons.uri.edu/nursing_facpubs/345/
4. (INSTRUMENT). Mammen, J.R., & Adams, J.L. (2022). Clinical Outcome Assessment Meaningfulness Survey (COA-MeanS).