Does Outpatient Palliative Care Improve Patient- Centered Outcomes - - PowerPoint PPT Presentation

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Does Outpatient Palliative Care Improve Patient- Centered Outcomes - - PowerPoint PPT Presentation

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Does Outpatient Palliative Care Improve Patient- Centered Outcomes in Parkinsons Disease? Benzi Kluger, MD, MS, FAAN Professor of Neurology and Chief, Neuropalliative Care Section University of Colorado November 1, 2018 #PCORI2018 Benzi

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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

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2 • November 19, 2018

Benzi Kluger, MD, MS, FAAN

  • Has nothing to disclose.
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3 • 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

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4 • 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 14th leading cause of death in the US
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5 • 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
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6 • November 19, 2018

Current Chronic Care Model for Parkinson’s Disease

Caregiver Neurologist + Motor Symptoms + PD Medications +/- Nonmotor Symptoms Primary Care Provider + Comorbid Illness + Non-PD Medications +/- Nutrition Other Resources (Support Groups, Church, Family, Lawyers…) +/- Caregiver Support, Advance Directives, Spiritual Needs… Patient TYPICAL OUTCOMES: GOOD: Motor Symptom Control; FAIR: Nonmotor Symptom Treatment POOR: Advance Care Planning, EOL Care, Caregiver Support, Psychosocial & Spiritual Needs

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7 • November 19, 2018

Palliative Care Model for Parkinson’s Disease

Patient & Caregiver Neurologist + Motor Symptoms + PD Medications Primary Care Provider + 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

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8 • 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
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9 • 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).

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10 • 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)
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11 • 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

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12 • 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

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13 • November 19, 2018

Current Status

  • Participant recruitment completed September 2017 (N = 210)
  • Data Collection completed September 2018
  • Data cleaning and analyses underway
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14 • November 19, 2018

Study Results QOL-AD at 6 months: 0.90 improvement (PC) vs 0.73 worsening (UC) P = 0.027

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Study Results ZBI 6 months: 0.75 worsening (PC) vs 2.56 worsening (UC) P = 0.049

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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
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17 • 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

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18 • 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
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19 • 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)

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20 • November 19, 2018

Learn More

  • www.pcori.org
  • info@pcori.org
  • #PCORI2018
  • www.neuropalliative.org
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21 • November 19, 2018

Questions?

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22 • 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