- Integrating Palliative Care in Ambulatory Care of Non-Cancer Serious Chronic Illness
- 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.
- Authors of Report
- 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).
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.
- 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