Integrating Palliative Care in Ambulatory Care of Non-Cancer Serious Chronic Illness

Project Summary Title and Description

Title
Integrating Palliative Care in Ambulatory Care of Non-Cancer Serious Chronic Illness
Description
Objectives. To evaluate availability, effectiveness, and implementation of interventions for integrating palliative care into ambulatory care for U.S.-based adults with serious life-threatening chronic illness or conditions other than cancer and their caregivers We evaluated interventions addressing identification of patients, patient and caregiver education, shared decision-making tools, clinician education, and models of care. Data sources. We searched key U.S. national websites (March 2020) and PubMed®, CINAHL, and the Cochrane Central Register of Controlled Trials (through May 2020). We also engaged Key Informants. Review methods. We completed a mixed-methods review; we sought, synthesized, and integrated Web resources; quantitative, qualitative and mixed-methods studies; and input from patient/caregiver and clinician/stakeholder Key Informants. Two reviewers screened websites and search results, abstracted data, assessed risk of bias or study quality, and graded strength of evidence (SOE) for key outcomes: health-related quality of life, patient overall symptom burden, patient depressive symptom scores, patient and caregiver satisfaction, and advance directive documentation. We performed meta-analyses when appropriate. Results. We included 46 Web resources, 20 quantitative effectiveness studies, and 16 qualitative implementation studies across primary care and specialty populations. Various prediction models, tools, and triggers to identify patients are available, but none were evaluated for effectiveness or implementation. Numerous patient and caregiver education tools are available, but none were evaluated for effectiveness or implementation. All of the shared decision-making tools addressed advance care planning; these tools may increase patient satisfaction and advance directive documentation compared with usual care (SOE: Low). Patients and caregivers prefer advance care planning discussions grounded in patient and caregiver experiences with individualized timing. Although numerous education and training resources for non-palliative care clinicians are available, we were unable to draw conclusions about implementation, and none have been evaluated for effectiveness. Models for integrating palliative care were not more effective than usual care for improving health-related quality of life or patient depressive symptom scores (SOE: Moderate) and may have little to no effect on increasing patient satisfaction or decreasing overall symptom burden (SOE: Low), but models for integrating palliative care were effective for increasing advance directive documentation (SOE: Moderate). Multimodal interventions may have little to no effect on increasing advance directive documentation (SOE: Low) and other graded outcomes were not assessed. For utilization, models for integrating palliative care were not more effective than usual care for decreasing hospitalizations; we were unable to draw conclusions about most other aspects of utilization or cost and resource use. We were unable to draw conclusions about caregiver satisfaction or specific characteristics of models for integrating palliative care. Patient preferences for appropriate timing of palliative care varied; costs, additional visits, and travel were seen as barriers to implementation. Conclusions. For integrating palliative care into ambulatory care for serious illness and conditions other than cancer, advance care planning shared decision-making tools and palliative care models were the most widely evaluated interventions and may be effective for improving only a few outcomes. More research is needed particularly on identification of patients for these interventions; education for patients, caregivers, and clinicians; shared decision-making tools beyond advance care planning and advance directive completion; and specific components, characteristics, and implementation factors in models for integrating palliative care.
Attribution
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Authors of Report
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Methodology description
Review Approach This mixed methods review includes a grey literature search and systematic reviews of the published quantitative and qualitative, mixed-methods, and process evaluation literature, as well as an integration of results across these sources and review methods. We followed the methods outlined in the Agency for Healthcare Research and Quality’s (AHRQ’s) Methods Guide for Effectiveness and Comparative Effectiveness Reviews (refer to the Methods Appendix for additional details). We have reported the results of the systematic review in accordance with the Preferred Items for Reporting in Systematic Reviews and Meta-Analyses (PRISMA).8 Integrative review methods are based on the 2017 Cochrane guidance, Qualitative and Implementation Methods Group Guidance Paper 5: Methods for integrating qualitative and implementation evidence within intervention effectiveness reviews,9 and the Joanna Briggs Institute methods for mixed methods systematic reviews.10 AHRQ developed the topic of this systematic review. We recruited Key Informants (KIs) to refine the topic and key questions and provide input on the integration of results. We recruited a Technical Expert Panel (TEP) to provide input on all details of the protocol, including outcomes. The KIs and TEP represented palliative care, primary care, and other ambulatory specialties, and included physicians, nurses, and social workers; we also included patient advocate KIs. With the feedback from the TEP, KIs, AHRQ, and our partners, the National Institute for Nursing Research, and the Health Resources and Services Administration, we finalized the protocol and posted it on the AHRQ Effective Health Care Program’s website (www.effectivehealthcare.ahrq.gov). Study Selection We searched PubMed, CINAHL, and the Cochrane Central Register of Controlled Trials in May 2020. Two team members independently applied eligibility criteria (Table 1 and Table 2) to citations identified by these searches. In March 2020, we searched key U.S. national websites identified as relevant to the Key Questions and refined with input from AHRQ and Technical Experts, including websites from palliative care organizations, primary care and specialty healthcare professional organizations, government organizations, foundations with a major focus in palliative care, and patient organizations (see Methods Appendix A-2 for full list of websites searched). Two reviewers simultaneously screened available website content for eligibility based on the Population, Intervention, Comparisons, Outcomes, Type of study, Setting (PICOTS); specific relevance to integrating palliative care into ambulatory care in the United States; and our criterion that materials must have been developed or updated within the last 5 years. Full details on the search strategy and eligibility criteria are in the Methods Appendix (Appendix A-4). Paired investigators abstracted data sequentially. For quantitative studies, reviewers assessed risk of bias independently. We used the Cochrane Risk of Bias Tool, Version 2, for assessing the risk of bias of randomized controlled trials (RCTs).12 For non-randomized studies, we used the Cochrane Risk of Bias Assessment Tool for Non-Randomized Studies of Interventions (ROBINS-I) tool.13 For qualitative and mixed-methods studies, reviewers independently assessed study quality using the Joanna Briggs Institute Checklist14, 15 (see Methods Appendix A-12 for more details). In addition to seeking feedback from the Key Informants on the key questions, we engaged two separate groups of Key Informants to provide input on the integrative review process: one group of patients and caregivers; and one group of stakeholders, including practicing clinicians, relevant professional and consumer organizations, purchasers of healthcare, representatives of Learning Health Systems, and others with experience making healthcare decisions. We compiled key issues elicited from the Key Informants and used those to inform our analysis of the qualitative, mixed-methods, and process evaluation literature and the overall integration. At the end of the project, we also conducted sessions with the Key Informants to refine the analysis and integration results.
PROSPERO
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DOI
N/A
Notes
The data of this project was entered retrospectively by uploading data to the project from other software and file format such as Excel or Word. 47 Evidence tables inclusive of baseline data, study characteristics, outcome/results, etc.
Funding Source
Agency for Healthcare Research and Quality

Key Questions

1. KQ1a. What prediction models, tools, triggers, and guidelines and position statements are available about how to identify when and which patients with serious life-threatening chronic illness or conditions in ambulatory settings could benefit from palliative care?
2. KQ1b. What is the effectiveness of prediction models, tools, and triggers for identifying when and which patients with serious life-threatening chronic illness or conditions in ambulatory settings could benefit from palliative care?
3. KQ1c. How have prediction models, tools, and triggers for identifying when and which patients with serious life-threatening chronic illness or conditions in ambulatory settings could benefit from palliative care been implemented? What is the evidence for how, when, and for which patients they could best be implemented in care?
4. KQ2a. What educational materials and resources are available about palliative care and palliative care options for patients with serious life-threatening chronic illness or conditions in ambulatory settings and their caregivers?
5. KQ2b. What is the effectiveness of educational materials and resources about palliative care and palliative care options for patients with serious life-threatening chronic illness or conditions and their caregivers in ambulatory settings?
6. KQ2c. How have educational materials and resources about palliative care and palliative care options for patients with serious life-threatening chronic illness or conditions and their caregivers in ambulatory settings been implemented? What is the evidence for how, when and for which patients and caregivers they could best be implemented in care?
7. KQ3a. What palliative care shared decision-making tools are available for patients with serious life-threatening chronic illness or conditions in ambulatory settings and their caregivers?
8. KQ3b. What is the effectiveness of palliative care shared decision-making tools for patients with serious life-threatening chronic illness or conditions in ambulatory settings and their caregivers?
9. KQ3c. How have palliative care shared decision-making tools been implemented for patients with serious life-threatening chronic illness or conditions in ambulatory settings and their caregivers? What is the evidence for how, when, and for which patients and caregivers they could best be implemented in care?
10. KQ4a. What palliative care training and educational materials are available for non-palliative care clinicians caring for patients with serious life-threatening chronic illness or conditions in ambulatory settings?
11. KQ4b. What is the effectiveness of palliative care training and educational materials (with or without other intervention components) for non-palliative care clinicians caring for patients with serious life-threatening chronic illness or conditions in ambulatory settings?
12. KQ4c. How have palliative care training and educational materials (with or without other intervention components) for non-palliative care clinicians caring for patients with serious life-threatening chronic illness or conditions in ambulatory settings been implemented? What is the evidence for how, when, and for which clinicians they could best be implemented in care?
13. KQ5a. What models and multimodal interventions for integrating palliative care have been developed for patients with serious life-threatening chronic illness or conditions in ambulatory settings?
14. KQ5b. What is the effectiveness of models and multimodal interventions for integrating palliative care for patients with serious life-threatening chronic illness or conditions in ambulatory settings?
15. KQ5c. What are components of models and multimodal interventions for integrating palliative care in ambulatory settings? What models and multimodal interventions have been implemented for key subpopulations? What components and characteristics of these models and multimodal interventions contribute to their effective implementation? What is the evidence for how, when, and for which patients they could best be implemented in care?
16. KQ1a. What prediction models, tools, triggers, and guidelines and position statements are available about how to identify when and which patients with serious life-threatening chronic illness or conditions in ambulatory settings could benefit from palliative care?
17. KQ1b. What is the effectiveness of prediction models, tools, and triggers for identifying when and which patients with serious life-threatening chronic illness or conditions in ambulatory settings could benefit from palliative care?
18. KQ1c. How have prediction models, tools, and triggers for identifying when and which patients with serious life-threatening chronic illness or conditions in ambulatory settings could benefit from palliative care been implemented? What is the evidence for how, when, and for which patients they could best be implemented in care?
19. KQ2a. What educational materials and resources are available about palliative care and palliative care options for patients with serious life-threatening chronic illness or conditions in ambulatory settings and their caregivers?
20. KQ2b. What is the effectiveness of educational materials and resources about palliative care and palliative care options for patients with serious life-threatening chronic illness or conditions and their caregivers in ambulatory settings?
21. KQ2c. How have educational materials and resources about palliative care and palliative care options for patients with serious life-threatening chronic illness or conditions and their caregivers in ambulatory settings been implemented? What is the evidence for how, when and for which patients and caregivers they could best be implemented in care?
22. KQ3a. What palliative care shared decision-making tools are available for patients with serious life-threatening chronic illness or conditions in ambulatory settings and their caregivers?
23. KQ3b. What is the effectiveness of palliative care shared decision-making tools for patients with serious life-threatening chronic illness or conditions in ambulatory settings and their caregivers?
24. KQ3c. How have palliative care shared decision-making tools been implemented for patients with serious life-threatening chronic illness or conditions in ambulatory settings and their caregivers? What is the evidence for how, when, and for which patients and caregivers they could best be implemented in care?
25. KQ4a. What palliative care training and educational materials are available for non-palliative care clinicians caring for patients with serious life-threatening chronic illness or conditions in ambulatory settings?
26. KQ4b. What is the effectiveness of palliative care training and educational materials (with or without other intervention components) for non-palliative care clinicians caring for patients with serious life-threatening chronic illness or conditions in ambulatory settings?
27. KQ4c. How have palliative care training and educational materials (with or without other intervention components) for non-palliative care clinicians caring for patients with serious life-threatening chronic illness or conditions in ambulatory settings been implemented? What is the evidence for how, when, and for which clinicians they could best be implemented in care?
28. KQ5a. What models and multimodal interventions for integrating palliative care have been developed for patients with serious life-threatening chronic illness or conditions in ambulatory settings?
29. KQ5b. What is the effectiveness of models and multimodal interventions for integrating palliative care for patients with serious life-threatening chronic illness or conditions in ambulatory settings?
30. KQ5c. What are components of models and multimodal interventions for integrating palliative care in ambulatory settings? What models and multimodal interventions have been implemented for key subpopulations? What components and characteristics of these models and multimodal interventions contribute to their effective implementation? What is the evidence for how, when, and for which patients they could best be implemented in care?

Associated Extraction Forms

Associated Studies (each link opens a new tab)

TitleAuthorsYear
Prioritizing Primary Care Patients for a Communication Intervention Using the "Surprise Question": a Prospective Cohort Study.2019
Peer mentoring: a culturally sensitive approach to end-of-life planning for long-term dialysis patients.2005
Randomized controlled trial of SPIRIT: an effective approach to preparing African-American dialysis patients and families for end of life.2009
Effect of a disease-specific advance care planning intervention on end-of-life care.2012
Effect of a Patient and Clinician Communication-Priming Intervention on Patient-Reported Goals-of-Care Discussions Between Patients With Serious Illness and Clinicians: A Randomized Clinical Trial.2018
Social Worker-Aided Palliative Care Intervention in High-risk Patients With Heart Failure (SWAP-HF): A Pilot Randomized Clinical Trial.2018
Effect of a Collaborative Care Intervention vs Usual Care on Health Status of Patients With Chronic Heart Failure: The CASA Randomized Clinical Trial.2018
A Systematic Intervention To Improve Serious Illness Communication In Primary Care.2017
Reengineering Dialysis: The Role of Palliative Medicine.2016
Primary palliative care clinic pilot project demonstrates benefits of a nurse practitioner-directed clinic providing primary and palliative care.2012
Effectiveness of care coordination and health counseling in advancing illness.2009
The comprehensive care team: a controlled trial of outpatient palliative medicine consultation.2004
The effects of etomidate on cerebral metabolism and blood flow in a canine model for hypoperfusion.1991
Primary Results of the Patient-Centered Disease Management (PCDM) for Heart Failure Study: A Randomized Clinical Trial.2015
Palliative Care in Heart Failure: The PAL-HF Randomized, Controlled Clinical Trial.2017
Effects of a program for coordinated care of advanced illness on patients, surrogates, and healthcare costs: a randomized trial.2006
Effects of a Telehealth Early Palliative Care Intervention for Family Caregivers of Persons With Advanced Heart Failure: The ENABLE CHF-PC Randomized Clinical Trial.2020
A systematic intervention to improve serious illness communication in primary care: Effect on expenses at the end of life.2020
The comprehensive care team: a description of a controlled trial of care at the beginning of the end of life.2003
Comparison of Integrated Outpatient Palliative Care With Standard Care in Patients With Parkinson Disease and Related Disorders: A Randomized Clinical Trial.2020
Feasibility of Implementing a Palliative Care Intervention for People with Heart Failure: Learnings from a Pilot Randomized Clinical Trial.2019
An Intervention to Enhance Goals-of-Care Communication Between Heart Failure Patients and Heart Failure Providers.2016
Process and impact of an advance care planning intervention evaluated by bereaved surrogate decision-makers of dialysis patients.2017
InformedTogether: Usability Evaluation of a Web-Based Decision Aid to Facilitate Shared Advance Care Planning for Severe Chronic Obstructive Pulmonary Disease.2015
LVAD patients' and surrogates' perspectives on SPIRIT-HF: An advance care planning discussion.-- Not Found --
Training Clinicians in Serious Illness Communication Using a Structured Guide: Evaluation of a Training Program in Three Health Systems.2020
Advance care planning with patients on hemodialysis: an implementation study.2019
Building an Outpatient Kidney Palliative Care Clinical Program.2018
Perspectives of Primary Care Providers Toward Palliative Care for Their Patients.2016
Barriers and Facilitators to Scaling Up Outpatient Palliative Care.2016
Feasibility and acceptability of a collaborative care intervention to improve symptoms and quality of life in chronic heart failure: mixed methods pilot trial.2014
Giving voice to patients' and family caregivers' needs in chronic heart failure: implications for palliative care programs.2011
Improving Quality of Life in Chronic Obstructive Pulmonary Disease by Integrating Palliative Approaches to Dyspnea, Anxiety, and DepressionDecember, 2014
Patient perceptions of an outpatient palliative care intervention: "It had been on my mind before, but I did not know how to start talking about death...".2003
Exploring Opportunities for Primary Outpatient Palliative Care for Adults with Cystic Fibrosis: A Mixed-Methods Study of Patients' Needs.2018
Interprofessional Work in Serious Illness Communication in Primary Care: A Qualitative Study.2019
Provider Perspectives on Advance Care Planning Documentation in the Electronic Health Record: The Experience of Primary Care Providers and Specialists Using Advance Health-Care Directives and Physician Orders for Life-Sustaining Treatment.2017
A randomized trial to improve communication about end-of-life care among patients with COPD.2012

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