Does a novel community-based outpatient palliative care intervention for Parkinson’s disease and related disorders improve care? Qualitative results from patients and care partners

Author:

Bock Meredith A12ORCID,Macchi Zachary A3ORCID,Harrison Krista L4,Katz Maya5,Dini Megan6,Jones Jacqueline7,Ayele Roman3,Kutner Jean S8,Pantilat Steven Z9,Martin Christine10,Sillau Stefan3,Kluger Benzi11

Affiliation:

1. Department of Neurology at University of California, San Francisco, CA, USA

2. San Francisco Veterans Affairs Medical Center, San Francisco, CA, USA

3. Departments of Neurology and Medicine at University of Colorado School of Medicine, Anschutz Medical Campus, Aurora, CO, USA

4. Department of Medicine, Division of Geriatrics at University of California, San Francisco, CA, USA

5. Department of Neurology at Stanford University, Stanford, CA, USA

6. Parkinson’s Foundation, New York, NY, USA

7. College of Nursing, University of Colorado Anschutz Medical Campus, Aurora, CO, USA

8. Department of Medicine, Division of General Internal Medicine, University of Colorado School of Medicine, Aurora, CO, USA

9. Department of Medicine, Division of Palliative Medicine at University of California, San Francisco, CA, USA

10. Center for Health and Technology, University of Rochester, Rochester, NY, USA

11. Departments of Neurology and Medicine, Division of Palliative Care, University of Rochester, Rochester, NY, USA

Abstract

Background: Palliative care has the potential to address significant unmet needs in people with Parkinson’s disease and related disorders, but models that rely on in-person specialty palliative care teams have limited scalability. Aim: To describe patient and care partner experiences with a novel, community-based palliative care intervention for Parkinson’s disease. Design: Qualitative study embedded in a randomized clinical trial to document participant experiences with a novel palliative care intervention (community neurologist training and remote team-based specialist palliative care). Transcripts were coded and thematically analyzed through a combination of team-based inductive and deductive coding. Setting/Participants: Twenty-eight patients and 33 care partners purposively sampled from participants in a randomized clinical trial of a palliative care intervention for Parkinson’s disease and related disorders conducted at nine sites. Results: Benefits of the intervention included management of a wider range of non-motor symptoms, facilitation of conversations about the future, greater engagement with the health care team, and increased referrals to resources. Participants identified areas of improvement, including uptake of palliative care training by community neurologists, additional prognostic counseling, and clarity and timeliness of communication with the multidisciplinary team. Conclusions: Clinicians caring for people with Parkinson’s disease and related disorders should screen for non-motor symptoms, provide regular prognostic counseling, and refer to specialty palliative care services earlier in the course of illness. Future interventions should be designed to promote uptake of palliative care training by community neurologists and further optimize referral to and coordination with in-person or remote specialty palliative teams.

Funder

national institute of nursing research

Publisher

SAGE Publications

Subject

Anesthesiology and Pain Medicine,General Medicine

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