Parkinson's disease (PD) affects 1-2% of people older than 65 years. While traditionally described by its motor symptoms, PD also includes nonmotor symptoms, such as pain and dementia, which are common and associated with mortality, reduced quality of life, nursing home placement, and caregiver distress. Other forms of parkinsonism, collectively referred to as PD and related disorders (PDRD), share core features of PD but have additional symptoms and worse prognoses.
Standard care for patients with PDRD is frequently provided by the patient’s primary care physician and a neurologist: standard care is rarely team-based.
Recognition of the potential relevance of PC has expanded to include earlier utilization, delivery to non-cancer populations, in outpatient settings, and by persons not specializing in PC (primary PC) or by disease-specific clinics including PC (integrated PC).
A growing number of centers deliver PC to patients with PDRD, usually using outpatient integrated PC. This model comprises standard care plus outpatient PC.
The interdisciplinary team consists of a palliative neurologist with informal training in PC, a nurse, social worker, chaplain with PDRD experience, and a board-certified palliative medicine physician. Palliative medicine specialists primarily focus on the goals of care discussions and symptom management.
The typical visit addresses non-motor symptoms, goals of care, anticipatory guidance, difficult emotions, and caregiver support. To improve fidelity and enhance the dissemination of information, visits are standardized using checklists for each team member.
Visits are supplemented with phone calls at the discretion of the PC team, and participants can contact the PC team as needed. Suggestions for care outside of PC issues are provided to the patient’s standard care team.
Results with integrated outpatient PC
• More benefits among patients with PDRD compared with standard care alone; the benefits were greatest for those with high PC needs.
• A higher proportion of patients experience clinically significant benefit; a lower proportion of patients suffer clinically significant worsening.
• PDRD patients with caregivers have better QoL.
• High adherence in the PC intervention patients.
• Improved global symptom burden, and significant benefit in motor symptoms. Improvement in global symptoms may reflect the systematic approach to the detection of non-motor symptoms using structured checklists: they increase the diffusion of this model.
• Improved caregiver anxiety.
These results show a comparative advantage to outpatient PC compared with standard care in patients with PDRD for several outcomes of interest to patients and families. This model has the potential to improve results, particularly for persons who are underserved by current types of care (e.g., patients with advanced illness and dementia).
This highlights a need to develop hybrid models of PC that build on the assets of both disease and PC specialists, and that efficiently use the limited pool of palliative medicine experts.
See reference for more information.
Kluger BM. et al. Comparison of integrated outpatient palliative care with standard care in patients with Parkinson disease and related disorders. A randomized clinical trial. JAMA Neurol. Internet. Available at https://jamanetwork.com/journals/jamaneurology/fullarticle/2760511 Accessed on March 32, 2020.