Results Summary
What was the project about?
Patients with serious illnesses such as heart failure or advanced cancer often have pain or other severe symptoms. Palliative care focuses on improving quality of life by preventing and treating suffering. Patients also receive spiritual and mental health support. Home-based palliative care, or HBPC, relieves patients’ pain and symptoms at home. But patients and doctors often don’t take part in HBPC programs or research.
At first, the research team planned a study to learn how well HBPC improves physical and mental well-being compared with usual care. But the team had trouble enrolling patients. As a result, the team did a study to learn more about the challenges in taking part in HBPC programs and research.
What did the research team do?
The research team did interviews with 68 people in California. Of these, 17 were patients, 8 were caregivers, 31 were doctors, and 12 were healthcare administrators. The team talked with patients and caregivers who did and didn’t enroll in HBPC programs.
The research team also held nine focus groups with 25 people at HBPC agencies, such as doctors, nurses, and other health professionals. Groups met in person or virtually.
Patients, caregivers, doctors, and policy makers helped plan the study.
What were the results?
People described challenges to taking part in HBPC programs and research. The research team grouped these challenges into four main topics:
- Identifying patients for the HBPC program. For example, doctors didn’t have much time to determine which patients should take part in HBPC.
- Timing of enrollment. For example, some people didn’t enroll in HBPC because they were feeling overwhelmed with their own care or their family member’s care.
- Lack of knowledge about palliative care. People were confused about what it is and when doctors should refer patients to HBPC.
- The newness of HBPC. As a new type of care, programs may differ in the services they offer. Also, patients’ insurance may not cover the programs.
The research team also learned what might make people more willing to take part in HBPC programs and research:
- Building relationships between HBPC and healthcare staff
- Having healthcare staff personally introduce patients to HBPC program staff
- Explaining differences between HBPC and hospice programs
What were the limits of the project?
The study took place in California. Findings may differ for patients and doctors in other places.
Future research could look for ways to address the challenges to taking part in HBPC found in this study.
How can people use the results?
Health systems and doctors can use these results when looking for ways to increase enrollment in HBPC programs and research.
Professional Abstract
Background
The research team originally planned to conduct a randomized controlled trial in which the team would enroll eligible patients with serious chronic conditions and compare the effectiveness of home-based palliative care (HBPC) with enhanced usual care on patients’ physical and mental well-being. However, due to challenges with enrolling patients in the trial, the team transitioned to a qualitative study examining challenges to and facilitators of referral to and acceptance of HBPC.
Objective
To identify challenges to and facilitators of referral to and acceptance of HBPC and challenges to participation in HBPC research among patients and caregivers, HBPC providers, physicians, and administrators at accountable care organizations
Study Design
| Design Element | Description |
|---|---|
| Design | Qualitative analysis |
| Data Sources and Data Sets |
Interviews with 68 individuals including 17 patients, 8 proxies or caregivers, 31 doctors, and 12 administrators; 9 focus groups including 25 administrators and clinicians at HBPC agencies |
| Analytic Approach | Grounded theory thematic analysis |
| Outcomes | A set of challenges to and facilitators of enrollment in HBPC to support palliative care practice and policy |
Methods
This qualitative study examined challenges to and facilitators of HBPC research and services for patients with chronic conditions who are seriously ill. HBPC provides pain and symptom relief and psychosocial and spiritual support at home. The goal of HBPC is to improve quality of life for patients and their family members. However, few patients enroll in HBPC programs. Identifying challenges to HBPC research and services can help health system leaders and clinicians improve access to palliative care.
The research team conducted semi-structured phone interviews with 68 people in California including 17 patients, 8 proxies or caregivers, 31 primary care doctors, and 12 administrators. Patients and caregivers included people who enrolled in HBPC programs and people who declined enrollment. The team also conducted nine focus groups, held in person or virtually, with 25 administrators and clinicians at HBPC agencies.
A stakeholder advisory committee including patients, caregivers, physicians, and policy makers helped plan the study.
Results
In focus groups and interviews, participants reported several challenges to HBPC research and services that the research team grouped into four categories:
- Limitations of patient recruitment strategies, including physicians having limited time to identify patients who are eligible to participate
- Timing of enrollment; for example, some patients or caregivers declined enrollment because they were feeling overwhelmed with their own care or their family member’s care
- Lack of palliative care health literacy, including confusion about what palliative care is, how it differs from end-of-life care, and when physicians should refer patients to HBPC
- Novelty of the HBPC market, meaning programs lack universal funding, structure, and a standardized delivery model
Facilitators of HBPC research and services included developing relationships between HBPC agencies and healthcare staff; having warm hand-offs between patients, healthcare staff, and HBPC agencies; and distinguishing between HBPC and hospice programs.
Limitations
Interviews and focus groups took place with patients, physicians, and administrators in California. Findings may not be generalizable to other regions.
Conclusions and Relevance
In this study, the research team identified challenges to and facilitators of participation in HBPC research and services. Health systems, HBPC teams, and doctors can use these results when looking for ways to promote access to palliative care for patients with serious chronic conditions.
Future Research Needs
Future research comparing the effectiveness of HBPC with other care approaches could be designed to overcome the enrollment challenges identified in this study.
Final Research Report
View this project's final research report.
Journal Citations
Related Journal Citations
Peer-Review Summary
Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also assesses how the project addressed PCORI’s Methodology Standards. During peer review, experts read a draft report of the research and provide comments about the report. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. These reviewers cannot have conflicts of interest with the study.
The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve descriptions of the conduct of the study or to clarify the connection between results and conclusions. Sometimes, awardees revise their draft reports twice or more to address all of the reviewers’ comments.
Peer reviewers commented and the researchers made changes or provided responses. Those comments and responses included the following:
- The reviewers lauded the researchers’ efforts to make the most of their planned trial despite their failure to recruit enough participants to continue the study. The reviewers did advise the researchers to include an explanation early in the report about terminating the trial and the decision to continue with a qualitative study of engagement with palliative care and research more generally. The researchers added a paragraph at the beginning of the report explaining the report structure and where to find the information on the originally planned randomized controlled trial.
- The reviewers hypothesized that study recruitment failed because the researchers did not approach primary care providers directly to recruit eligible patients, and that the researchers should have piloted their study algorithm before the main project to determine whether the algorithm accurately identified patients who were eligible for home-based palliative care. The researchers explained that although representatives from the insurance company and accountable care organization expressed enthusiasm for the study and promised that primary care providers would be engaged, they prevented the researchers from contacting primary care providers directly. In addition, the researchers noted that they did not pilot the algorithm themselves because the participating insurance company ran algorithms to identify the potential sample of patients eligible for home-based palliative care. The researchers acknowledged that they would likely have had more recruitment success if they had been able to recruit primary care providers directly.
- The reviewers expressed concern about the researchers’ assertion regarding numerous inaccuracies in the claims data they used to identify patients eligible for home-based palliative care. The researchers explained that conclusions about inaccurate data arose from their qualitative findings and came up repeatedly in interviews and focus groups. The researchers did admit, however, that some of the problems they experienced with the data may have been a result of incorrect search terminology used to identify eligible patients.
- The reviewers asked whether the researchers had considered potential bias in their results given the small number of interview participants and the likely self-selection of participants into the study. The researchers explained that they had reached thematic saturation early in interviews with patients and caregivers as well as with primary care providers, but they did acknowledge that they could have interviewed more accountable care organization leaders to reach thematic saturation in that group.
Conflict of Interest Disclosures
Project Information
Patient / Caregiver Partners
- Beth Caldwell, Patient Stakeholder
- Sara Barton, Caregiver Stakeholder
- James Peterson, Patient Stakeholder
- Michael Daniels, Caregiver Stakeholder
- Mimi Lee, Caregiver Stakeholder
- Bruce Gould, MD, Community Oncology Alliance Patient Advocate Network
- Erica Phung, American Heart Association
- Kathleen Kelly, Family Caregiver Alliance: National Center on Caregiving
Other Stakeholder Partners
- Shari M. Ling, MD, Centers for Medicare and Medicaid Services Mark Crafton, Joint Commission
- Bruce Smith, MD, Cambia Health Solutions
- Philip Chase, MD, HealthNet
- Marcy Carty, MD, Blue Cross Blue Shield of Massachusetts
- James Mittelberger, MD, United Healthcare/Optum
- Jon Broyles, Coalition to Transform Advanced Care
- Ira Byock, Providence Health and Services
- Marcus Thygeson, MD, Blue Shield of California
- Terry Hill, MD, Hill Physicians Medical Group
- Chris Van Gorder, Scripps Medical Group
- Melvyn Sterling, MD, St. Joseph’s Medical Group