Results Summary
What was the research about?
Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and wishes about future care. The goal is to help people receive care that aligns with their values, goals, and wishes during serious illness or injury. Advance care planning wishes may be documented in legal forms called advance directives, or ADs. They can also be shared with family, friends, and clinicians in conversations. Many older adults, especially Spanish-speaking adults, haven’t engaged in advance care planning.
In this study, the research team wanted to prepare Spanish-speaking older patients for engaging in advance care planning. The team compared patients in one of two groups:
- PREPARE group. Patients viewed a website, called PREPARE, that has information about advance care planning in Spanish and an easy-to-read AD. They also received a pamphlet and DVD to take home. The team called patients to remind them to talk about advance care planning at their next primary care visit and to bring the AD to the visit.
- AD-only group. Patients received only the easy-to-read AD and a phone call reminder about their primary care visit.
What were the results?
Compared with patients in the AD-only group, patients in the PREPARE group
- Were more likely to have their wishes documented in their health record
- Were more likely to engage in advance care planning activities, such as conversations, at each follow-up visit in the next year
Who was in the study?
This study included 445 Hispanic or Latino patients who spoke Spanish and had two or more long-term health problems. Patients received care at one of four clinics in San Francisco. These clinics serve patients who have low incomes and have public insurance. The average age was 64, and 72 percent were women.
What did the research team do?
The research team created easy-to-read ADs and an easy-to-use PREPARE website for Spanish-speaking older adults. PREPARE guides users through five planning steps for medical decision making. PREPARE focuses on patient wishes and how to discuss them with family, friends, and clinicians. The research team showed patients the materials in study offices.
The research team looked at whether patients had their advance care planning wishes in their health record at the start of the study. They looked again 15 months later to see if there were new records of patients’ wishes. The team also asked about advance care planning activities, such as talking to family, friends, and clinicians, at the start of the study and up to 12 months after their primary care visit.
What were the limits of the study?
All patients received care at clinics in San Francisco. Results may differ for patients in other areas and at other clinics.
Future research could include patients in other locations and health systems. Researchers could also look at whether advance care planning helps people match the care they want with the health care they receive over their life course.
How can people use the results?
Spanish-speaking patients could consider using the easy-to-read ADs and the PREPARE website when doing advance care planning.
Professional Abstract
Objective
To compare the effectiveness of a patient-centered advance care planning website called PREPARE plus an easy-to-read advance directive (AD) legal form with an AD alone on advance care planning documentation and engagement
Study Design
| Design Elements | Description |
|---|---|
| Design | Randomized controlled trial |
| Population | 445 Spanish-speaking, Latino and Hispanic adults ages 55 and older, receiving care at 1 of 4 primary care clinics in a safety-net health system, with 2 or more chronic illnesses, 2 or more primary care visits in the past year, and 2 or more inpatient or outpatient visits in the past year |
| Interventions/ Comparators |
|
| Outcomes |
Primary: advance care planning documentation Secondary: advance care planning engagement |
| Timeframe | 15-month follow-up for primary outcome |
This randomized controlled trial compared the effectiveness of an advance care planning website, called PREPARE, plus an easy-to-read AD versus the AD alone in increasing documentation of patients’ advance care planning wishes in their medical records. Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. Advance care planning wishes may be documented using ADs, which are legal forms, and may also be shared in conversations with family, friends, and medical providers.
To overcome a dearth of appropriate advance care planning materials for Spanish-speaking patients, researchers created easy-to-read ADs written at a fifth-grade reading level and the PREPARE website in Spanish. PREPARE uses video stories and a step-by-step program to guide people through the advance care planning process.
Researchers randomized patients to one of two groups. Patients in the PREPARE+AD group reviewed the website in the study’s research offices and created an action plan. This group also received a pamphlet, booklet, and DVD to take home. Patients assigned to the AD-only group only received the easy-to-read AD. In the PREPARE+AD group, researchers called patients one to three days prior to their primary care visit to remind them to share their advance care planning wishes with their clinician. In the AD-only group, researchers called only to remind them about their upcoming visit.
This study included 445 patients receiving care at four primary care clinics in San Francisco. Of these, 72% were women, 99% were white-Hispanic or white-Latino, and the average age was 64.
Researchers assessed advance care planning documentation at the time of enrollment and 15 months after the primary care visit. They also assessed engagement in several advance care planning activities using validated ACP surveys at baseline and 1 week, 3 months, 6 months, and 12 months following the primary care visit.
Patients, caregivers, patient advocates, clinicians, and community partners helped design the study, recruit patients, and interpret the results of the study.
Results
New advance care planning documentation was higher in the PREPARE+AD group than in the AD-alone group (adjusted 39% vs. 24%; adjusted odds ratio=1.99 [95% confidence interval: 1.29, 3.08]; p=0.002), and self-reported advance care planning engagement was higher at each follow-up period (p<0.001).
Limitations
This study took place in one area of the country and only included Spanish-speaking older adults who receive care in a safety-net setting. Results may differ in other geographic regions or clinical settings.
Conclusions and Relevance
In this study, patient-facing ACP tools in Spanish, without clinical or system-level interventions, resulted in higher advance care planning documentation and engagement than AD alone.
Future Research Needs
Future research could include patients in different geographic regions, health systems, and clinical settings. Studies could also examine other outcomes, such as healthcare utilization and whether receipt of medical care is consistent with patients’ goals over the life course.
Final Research Report
View this project's final research report.
Journal Citations
Article Highlight: Advance care planning helps people with serious illnesses prepare for their future healthcare needs. But there are barriers that make it challenging, including a lack of planning materials and information available in Spanish. Results from this study, highlighted in JAMA Internal Medicine, showed that a culturally tailored, Spanish version of a website called PREPARE encouraged Spanish-speaking patients to do advance care planning better than giving them only written forms to state their wishes. The website also enabled them to begin planning on their own without a need for healthcare staff.
Results of This Project
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. The comments and responses included the following:
- Reviewers noted that the study did not include particularly high-risk patients, such as those who had dementia or serious illness. The researchers responded that they included patients with chronic illness but could not include patients with dementia because of the need for informed consent and the type of materials used in the intervention. The researchers also explained that their stakeholder advisory board felt it would be an undue burden on people with serious illness to ask them to participate in this study. The researchers agreed that the selection criteria could have caused bias in the study results and noted limitations to the study’s generalizability in their report.
- Reviewers suggested that the population tested was quite young and noted that the intervention seemed to have a much stronger effect on those patients under 65 than those over 65. The researchers said their goal was to prepare people with advance care planning skills well before a medical crisis and to exclude patients with very serious illness as advised by their stakeholder advisory board. The researchers also noted that the mean age of a vulnerable and marginalized population receiving medical care in a safety-net system tends to be lower than the age of the population seen in contexts such as an academic medical center.
- Reviewers suggested that a trial requiring informed consent may recruit a patient group that differs from the average clinical population, leading to an overestimation of the effectiveness of the tested intervention. The researchers explained that the study used an innovative informed- consent process developed specifically to recruit vulnerable and low-literacy populations but acknowledged that the study had limits to its generalizability because of the need to gain informed consent.
- Reviewers raised questions about the Spanish used and asked whether the translated materials were equally understandable for all Spanish speakers. The researchers agreed that Spanish-speaking cultures are very diverse with variations in the local vernacular, but the research team said they reviewed all study materials with a diverse group of Spanish speakers and had the material professionally translated. The researchers noted that the research staff included native Spanish speakers.