Does Outpatient Palliative Care Improve Patient- Centered Outcomes in Parkinson’s Disease? Benzi Kluger, MD, MS, FAAN Professor of Neurology and Chief, Neuropalliative Care Section University of Colorado November 1, 2018 #PCORI2018
Benzi Kluger, MD, MS, FAAN • Has nothing to disclose. 2 • November 19, 2018
Objectives At the conclusion of this activity, the participant should be able to: • Identify the palliative care needs of persons affected by Parkinson’s disease and related disorders (PDRD) • Understand how models of care for PDRD can affect patient and family-centered outcomes • Describe the benefits of team-based outpatient palliative care for patient and family-centered outcomes in PDRD 3 • November 19, 2018
Background and Significance • Parkinson’s disease (PD) is the second most common neurodegenerative illness affecting 1-2% of persons over age 60 • There are approximately one million people living in the US with PD and 60,000 new diagnoses are made each year • While traditionally characterized by motor symptoms (e.g. tremor) PD is also associated with nonmotor symptoms (e.g. dementia, pain, depression) • PD is the 14 th leading cause of death in the US 4 • November 19, 2018
Gaps in Current Models of PD Care • Nonmotor symptoms in PD are significantly under-recognized and under-treated • PD is associated with high caregiver burden and distress • Psychological and spiritual challenges associated with PD are not routinely addressed in current models of care • Persons living with PD are more likely to die in a hospital than at home • Hospice is underutilized in this population 5 • November 19, 2018
Current Chronic Care Model for Parkinson’s Disease Patient Primary Care Neurologist Provider + Motor Symptoms Caregiver + Comorbid Illness + PD Medications + Non-PD Medications +/- Nonmotor +/- Nutrition Symptoms Other Resources (Support Groups, Church, Family, Lawyers…) +/- Caregiver Support, Advance Directives, Spiritual Needs… TYPICAL OUTCOMES: GOOD: Motor Symptom Control; FAIR: Nonmotor Symptom Treatment POOR: Advance Care Planning, EOL Care, Caregiver Support, Psychosocial & Spiritual Needs 6 • November 19, 2018
Palliative Care Model for Parkinson’s Disease Neurologist Primary Care Patient & + Motor Symptoms Provider Caregiver + PD Medications + Comorbid Illness + Non-PD Medications OUTPATIENT INTERDISCIPLINARY PALLIATIVE CARE TEAM Physician (Nonmotor symptom, prognosis); Nurse (Nutrition, Home care, Advance Directives); Social Work (Caregiver Support, Finances); Chaplain (Spiritual Wellbeing, Grief Counseling) IMPROVED OUTCOMES: Patient quality of life, Caregiver Support, Nonmotor Symptom Burden, Grief and other difficult emotions, Spiritual Wellbeing, Advance Care Planning, Healthcare Utilization, End-of-life Care 7 • November 19, 2018
Study Design • Pragmatic Randomized Comparative Effectiveness Trial • Multi-site • University of Colorado, University of California San Francisco, and University of Alberta • Usual Care with neurologist and primary care provider • Usual Care plus Team-based outpatient palliative care • Neuropalliative physician, nurse, social worker and chaplain • Use of standardized checklists to ensure fidelity across sites 8 • November 19, 2018
Specific Aims 1) Determine whether interdisciplinary outpatient palliative care improves patient QOL or caregiver burden vs. usual care. 2) Identify characteristics of patients/caregivers most likely to benefit from palliative care. 3) Qualitative interviews to optimize services. Exploratory Aim: Describe effects of palliative care intervention on utilization of healthcare services (e.g. hospitalizations, home health care). 9 • November 19, 2018
Inclusion/Exclusion • PD or a related disorder (PSP, CBD, MSA, DLB) • Moderate to High Palliative Care Needs based on Palliative Care Needs Assessment Tool (NAT-PD) • Not already receiving palliative care • No urgent palliative care needs • No additional diagnosis also requiring palliative care (e.g. cancer) 10 • November 19, 2018
Primary and Secondary Outcome Measures • Quality of Life-Alzheimer’s Disease (QOL-AD)* • Zarit Burden Inventory (ZBI)* • Edmonton Symptom Assessment Scale (ESAS-PD) • Parkinson Disease questionnaire 39 (PDQ-39) • Prolonged Grief 12 (PG-12) • Functional Assessment of Chronic Illness Therapy Spiritual Wellbeing (FACIT-SW) • Healthcare utilization and employment (patients and caregivers) * Primary outcomes – difference in change at 6 months 11 • November 19, 2018
Patient and Stakeholder Engagement • Patient and Caregiver Advisory Council • Study Design • Study Conduct and Recruitment • Analysis and Dissemination • Other Stakeholders • Parkinson Foundation • Representatives from other PD support organizations, community neurologist, insurance and hospital industry 12 • November 19, 2018
Current Status • Participant recruitment completed September 2017 (N = 210) • Data Collection completed September 2018 • Data cleaning and analyses underway 13 • November 19, 2018
Study Results QOL-AD at 6 months: 0.90 improvement (PC) vs 0.73 worsening (UC) P = 0.027 14 • November 19, 2018
Study Results ZBI 6 months: 0.75 worsening (PC) vs 2.56 worsening (UC) P = 0.049 15 • November 19, 2018
Other Study Results at 6 months • ESAS (+ 0.3 UC vs – 7.3 PC, p = 0.0062) • PG-12 (-0.3 UC vs -2.9 PC, p = 0.01) • PDQ-39 (-0.04 UC vs – 5.2 PC, p = 0.055) • Patient CGI (-0.4 UC vs +0.3 PC, p = 0.0002) • No significant differences in FACIT or HADS 16 • November 19, 2018
Qualitative Results (summary of themes) • UC group had no team and caregiver most often served as captain • PC group felt supported by team and identified neuropalliative physician as captain • With PC patients and families had a road map and guide for their journey • With PC patients and families were heard and seen as people • With PC patients and families made decisions to engage with life goals, meaning and joy 17 • November 19, 2018
Optimizing PC for PD • Engage patient and caregivers for peer-to-peer guidance • Provide written summaries of visits including changes on scales • Plan to reach out to patients and families on a routine basis • Provide more individual attention to care partners 18 • November 19, 2018
Current and Future Directions • Improving Our Clinic • Now have patient and care partner peer navigators • Community-based Pragmatic Trial (NINR) • Implementation in Parkinson Foundation Centers of Excellence • Development of Training Materials for Neurologists • Implementation Guide (Kluger et al., 2018 Annals of Palliative Medicine) • New Neuropalliative Care Textbook (Springer) • Education in Palliative and End-of-life Care (EPEC) Neurology Adaptation (in collaboration with Northwestern) 19 • November 19, 2018
Learn More • www.pcori.org • info@pcori.org • #PCORI2018 • www.neuropalliative.org 20 • November 19, 2018
Questions? 21 • November 19, 2018
Thank You! Benzi Kluger, MD, MS, FAAN Professor of Neurology and Chief, Neuropalliative Care Section University of Colorado November 1, 2018 ACKNOWLEDGEMENTS: PCORI (Neeraj Arora), UCSF Team (Maya Katz, Nick Galifianakis, Steve Pantilat, Judy Long), University of Alberta Team (Janis Miyasaki, Francis Cheung), University of Colorado Team (Laura Palmer, Etta Abaca, Ryan Khan, Cari Friedman, Wendy Cernik, Stefan Sillau, Jean Kutner, Diane Fairclough), Our Stakeholders and Patient/Care Partner Advisory Group, and Kirk Hall 22 • November 19, 2018
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