Objective: To develop a comprehensive model of remote care for patients diagnosed with Parkinson’s disease (PD).

Background: Recent data suggests that the incidence of new diagnoses of PD in the US is approximately 90,000 (1), 50% higher than previously estimated. This increase, combined with the growing shortage of neurologists, including movement disorders specialists, results in people living with Parkinson’s disease (PwP) finding it increasingly difficult to find comprehensive, specialized care throughout their disease journey. We present a new, nationwide care model for neurodegenerative diseases, including PD, that provides comprehensive, patient-centered care-coordination services, and virtual medical care, in the patient’s home.

Method: The clinical team is comprised of subspecialty-trained neurologists, registered nurses, social workers, genetic counselors, medical assistants, an insurance navigator and dedicated prior authorization team. Two different clinical care paradigms have been offered: 1.Providing virtual care-coordination services alone to patients, and 2.Providing an integrated offering of virtual care-coordination alongside virtual medical care.  

Results: While care-coordination-only services are highly valued with a net promoter score (NPS) of 76 (range -100 to 100 with higher numbers suggesting better patient experience), the addition and integration of clinical care by subspecialty-trained neurologists improved the NPS score to 92, consistent with even greater patient satisfaction with services. Factors that have been identified as contributing to patient satisfaction include convenience, reduced time and expense of travel, improved access to the care team, availability of genetic testing for all patients and focus on humanistic outcomes.

Conclusion: This holistic model of virtual, centralized, comprehensive care provides more frequent touchpoints for patients between visits and improves access to subspecialty-trained neurologists for those who have difficulty with more frequent visits to clinic due to travel, immobility, geography, lack of support and/or limited in-person appointment availability. In addition, the heavy presence of care coordination helps guide PwPs on various aspects of care outside of the physician-patient relationship that significantly contribute to quality of life.

References: 1. Willis, A.W., Roberts, E., Beck, J.C. et al. Incidence of Parkinson disease in North America. npj Parkinsons Dis. 8, 170 (2022). https://doi.org/10.1038/s41531-022-00410-y

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MDS Abstracts - https://www.mdsabstracts.org/abstract/integrating-care-coordination-into-telemedicine-services-provides-a-better-patient-experience-than-care-coordination-alone-insights-from-a-national-neurodegenerative-disease-telemedicine-program/