Objective: To assess the palliative care needs in patients with Parkinson’s disease and related disorders at an academic movement disorders clinic.

Background: There is growing interest in integrating palliative care (PC) into the management of patients with Parkinson’s disease and related disorders (PDRD). However, which patients with PDRD would most benefit from PC is unknown. We identified four common complications of advanced disease that likely indicate a PC need: cognitive impairment, dysphagia, wheelchair use, and nursing home placement. Using these as indicators, we performed a retrospective review of our PDRD population to determine how many patients would most benefit from PC.

Method: A chart review was performed on 300 consecutive clinic patients with PDRD seen in the Movement Disorders Clinic at the University of Iowa. Electronic searches were performed to identify patient cognition, swallow, place of residence, and ambulatory status. Specifically, searches were done using the following terms: “MoCA”, “swallow,” “choke,” “aspirate”; “assisted living”, “nursing home” and “wheelchair”, as well as for neuropsychology testing and swallow study results. Based on these findings, patients were allocated scores as follows (with the higher scores indicating greater PC need): mild cognitive impairment, defined by formal testing or by a MoCA result of 15-26 scored 1. Dementia by neuropsychology testing, MoCA <15, or a formal diagnosis of Parkinson’s disease dementia or Dementia with Lewy Bodies, scored 2. Symptoms prompting a swallow study or needing a change in food consistency were scored 1, an abnormal swallow study was scored 2. Assisted living residents or those planning on a nursing home scored 1, nursing home residents scored 2. Occasional wheelchair use scored 1; being wheelchair-bound scored 2.

Results: 20% of patients had mild cognitive impairment and 12.3% had dementia. 10% complained of mild dysphagia, 6% had abnormal swallow studies. 9.3% were in assisted living, 2.6% in a nursing home.  Wheelchair use was occasional in 8.6% and daily in 5.3%. 47% of patients scored at least one. 27.6%, 13%, and 7.3 % of patients scored 2, 3 and 4 or more, respectively.

Conclusion: With a high proportion of our PDRD patients experiencing complications of advanced disease, our findings suggest that a large subset of this population has a need for PC.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/evaluating-palliative-care-needs-in-patients-with-parkinsons-disease-and-related-disorders/