Objective:

To describe the current availability of outpatient palliative care (PC) for persons with Parkinson’s disease (PWP) and their care-partners (CP).

Background:

There is widespread recognition that PWP and their CP have significant PC needs. There is also emerging evidence that PC approaches improve patient and family-centered outcomes. However, little is known about the availability of resources and current practices among physicians in addressing PC needs in outpatient neurology clinics.

Design/Methods:

A cross-sectional survey was sent to 665 healthcare professionals at the 33 Parkinson’s Foundation US based centers of excellence (COE). Respondents were asked about their current practices and resources for providing outpatient PC for PWP & CP. PC was defined as comprising five key components: systematic assessment and management of (a) non-motor symptoms, (b) emotional and spiritual distress, (c) care partner needs, and (d) advance care planning, and (e) timely referrals to specialist PC and Hospice. 

Results:

The response rate was 56% and of the 371 respondents, 164 were physicians. The following % of physicians reported most of their patients (>75%) receive the following: (a) 58% reported use of a screening tool to assess non-motor symptoms; however, pain was managed by only 6%. (b) 44% reported managing depression and anxiety. (c) 15% referred CPs to outside services. (d) 21% provided anticipatory guidance and 4% discussed advance care planning. (e) 8% referred end-stage PWP to hospice.

Conclusions:

Across leading academic centers there is evidence that many physicians are currently assessing and managing important PC needs for their patients with room for improvement in certain key components. Non-motor symptom screening is a more utilized PC component while referral to Hospice when appropriate and discussing advanced care planning were reported less.