Results Summary and Professional Abstract
|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.|
|This project's final research report is expected to be available by October 2019.|
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.
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Low Health Literacy/Numeracy
Individuals with Multiple Chronic/co-morbid Conditions