Objective: Develop a Motor Fluctuations Patient Journey Map (MFPJM) for people with Parkinson’s disease (PwP) to describe the holistic experience from pre-diagnosis through long-term treatment, with a focus on motor fluctuations.

Background: While there have been several surveys addressing the PwP perspective on specific medical (treatment) aspects and/or treatment issues related to the disease, there remains a need to understand how motor fluctuations are experienced across the disease journey.

Method: The MFPJM is in development based on in depth surveys with PwP and their care-partners (45-minute interviews) and healthcare professionals with experience of treating Parkinson’s disease (60-minute interviews). Interviews were conducted with 61 healthcare providers, 40 care-partners, and 33 PwP in the UK, Germany, France, and USA.

Results: Qualitative analysis supported 5 stages of the journey: onset & awareness, referral & diagnosis, early treatment, living with motor complications, and palliative care. PwP described experiencing subtle (often non-motor) symptoms long before they suspected PD. Across the 4 countries, PwP typically started their first treatment (often levodopa monotherapy) immediately following diagnosis. PwP described consistent symptom control for the first few years of treatment. After this ‘honeymoon’ phase, oral medications typically become less effective, and PwP/care-partners recalled noticing a more frequent re-emergence of motor and non-motor symptoms. However, 75% of PwP said they were not previously aware of the possibility of motor fluctuations until they developed them. While HCPs aim to minimize OFF time, treatment is centered around the patient’s personal tolerance/comfort level with symptoms, side effects, and pill burden. PwP and care-partners described the ‘trial-and-error’ process of frequently adjusting and optimizing the treatment plan as particularly frustrating. Eventually, as treatment options are no longer effective, PwP become dependent on their care-partner or other support services for daily life and seek more advanced treatments.

Conclusion: The MFPJM is in development as a visual aid to enable service providers to identify unmet needs, potential gaps and barriers in service provision, as well as identifying new opportunities for innovation.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/development-of-a-patient-journey-map-for-people-living-with-parkinsons-disease/