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.

Final Research Report

View this project's final research report.

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

Susan Enguidanos, PhD, MPH
University of Southern California
Expanding Access to Home-Based Palliative Care through Primary Care Medical Groups

Key Dates

December 2016
October 2021

Study Registration Information


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Populations Populations PCORI is interested in research that seeks to better understand how different clinical and health system options work for different people. These populations are frequently studied in our portfolio or identified as being of interest by our stakeholders. View Glossary
Intervention Strategy Intervention Strategies PCORI funds comparative clinical effectiveness research (CER) studies that compare two or more options or approaches to health care, or that compare different ways of delivering or receiving care. View Glossary
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Last updated: March 14, 2024