This research project is in progress. PCORI will post its findings here within 90 days after our final review is complete. In the meantime, results have been published in peer-reviewed journals, as listed below.
Making medical decisions can be difficult and stressful, especially if a patient has serious or chronic illness. Preparation for medical decision making, or advance care planning, has traditionally focused on making decisions about life-prolonging procedures, such as CPR, by completing advance directives. Yet, these forms are often not enough to adequately prepare the millions of people with chronic and advanced illness for complex medical decision making. To better prepare people for medical decision making, we created an advance care planning website called PREPARE (prepareforyourcare.org) in partnership with English and Spanish-speaking older patients and community stakeholders. PREPARE focuses on preparing people to identify and communicate their wishes and to make informed medical decisions over time by using video examples of patients' and caregivers' stories. Currently, PREPARE is only being testing among English speakers. However, PREPARE is being translated into Spanish, and it is important to test it among Spanish-speakers. The Hispanic and Latino population (referred to here as Latino) is increasing in the US, with an estimated 3 million Latinos aged 65 years and older. This population is expected to increase six-fold by 2030. The research team has a successful track record in working with the community to create and test culturally- and literacy-appropriate decision support materials. The team will use their experience to refine and test PREPARE among older Spanish-speaking Latinos with serious and chronic illness. The team will do this by working with patients, caregivers, community leaders and advocates, clinical staff, and healthcare providers from an integrated safety-net healthcare system in San Francisco.
Through partnerships with Latino patients and caregivers, Latino advocacy groups and primary care clinics, and local, state and national organizations, we plan to (1) obtain input from older Latinos through interviews to adapt and refine PREPARE in Spanish. Next, (2) we will randomize study participants to either receive only a Spanish advance directive (the control group) or to receive both the advance directive and the PREPARE website. The goal is to assess whether PREPARE helps older Latinos engage in multiple advance care planning behaviors (i.e., identifying and discussing their wishes with surrogate decision makers and clinicians as well as completing advance directives), improves their confidence and satisfaction with medical decision making, and helps to activate them during primary care visits to ask more questions and discuss advance care planning. We will ask participants questions about engagement in advance care planning at baseline, 1 week, and at 3, 6, and 12 months. Finally, (3) we will obtain detailed feedback and advice from Latino patients, caregivers, and clinicians about their perceived barriers and facilitators to implementing PREPARE within the Latino community to enable rapid and widespread dissemination.
|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.|