Objective: To determine how recently diagnosed people with Parkinson’s monitor their Parkinson’s symptoms in between medical consultations.

Background: Patients monitoring symptoms and reporting them accurately (e.g., frequency, severity, time of onset, and factors that make it worse or better) to the healthcare team is vital for successful self-management and effective treatment plans. Understanding how people with PD monitor their symptoms will help professionals identify education needs. With straightforward education programs, people with PD can learn to closely monitor their symptoms, allowing them to identify patterns or triggers that can help inform preventative measures and self-management strategies.

Method: A qualitative online survey instrument was developed by rehabilitation specialists delivering a recently diagnosed program and e-mailed to all participants.

Results: 22 people with PD (mean age 71, diagnosed with Parkinson’s less than 5 years) completed the survey. Our results showed that: participants considered monitoring their symptoms between medical consultations very important (52.6%), fairly important (21.1%), and important (26.3%). The main symptoms most frequently monitored included: walking ability; effectiveness of medications; balance and falling; sleep, anxiety, and depression. The top 3 issues perceived as important for monitoring and reporting as recently diagnosed individuals included: 89.5 % “new symptoms that have appeared since last consultation,” 52.6% “all the symptoms I have, even if I don’t think they PD-related,” and 63.2% “impact the symptoms have on daily life.” The most common monitoring tools included: 42.1% none, 36.9 % care partner, 26.3% other health professionals, 21.1% MyChart, 5.3% background technology, 10.5% electronic diaries, and 21.1% paper diaries. The top 3 challenges in monitoring included: “never sure whether things are getting worse or better,” “difficulty in accurately describing and reporting symptoms,”; and “Sometimes not sure what’s worth mentioning or monitoring.”

Conclusion: Most participants recognized the need for monitoring and expressed concerns about doing it more effectively. Care partners play an essential role in monitoring. Educational programs informing patients and care partners on keeping an accurate record are vital in helping doctors provide the best possible care for their health needs.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/how-do-recently-diagnosed-individuals-with-parkinsons-self-monitor-their-parkinsons-symptoms-between-consultations/