Telephone Outreach Enhances Recruitment of Underrepresented Seriously Ill Patients for an Advance Care Planning Pragmatic Trial.

BACKGROUND: Patients experiencing systemic patterns of disadvantage, such as racial/ethnic minorities and those with limited English proficiency, are underrepresented in research. This is particularly true for large pragmatic trials of potentially sensitive research topics, such as advance care planning (ACP). It is unclear how phone outreach may affect research participation by underrepresented individuals. OBJECTIVE: To assess the effect of phone outreach, in addition to standard mail survey recruitment, in a population-based ACP pragmatic trial at three academic health systems in California. DESIGN: Retrospective cohort study PATIENTS: Primary care patients with serious illness were mailed a survey in their preferred language. Patients who did not initially respond by mail received up to three reminder phone calls with the option of survey completion by phone. MAIN MEASURES: Effect of phone outreach on survey response rate associated with respondent demographic characteristics (e.g., Social Vulnerability Index [SVI], range 0 (low) to 1 (high)). RESULTS: Across the health systems, 5998 seriously ill patients were mailed surveys. We obtained completed surveys from 1215 patients (20% response rate); 787 (65%) responded after mail alone and 428 (35%) participated only after phone outreach. Patients recruited after phone outreach compared to mail alone were more socially vulnerable (SVI 0.41 v 0.35, P < 0.001), were more likely to report being a racial/ethnic minority (35% v 28%, P = 0.006), and non-English speaking (16% v 10%, P = 0.005). Age and gender did not differ significantly. The inclusion of phone outreach resulted in a sample that better represented the baseline population than mail alone in racial/ethnic minority (28% mail alone, 30% including phone outreach, 36% baseline population), non-English language preference (10%, 12%, 15%, respectively), and SVI (0.35, 0.37, 0.38, respectively). CONCLUSIONS: Phone outreach for a population-based survey in a pragmatic trial concerning a potentially sensitive topic significantly enhanced recruitment of underrepresented seriously ill patients.

Assessing Representativeness of Seriously Ill Patient Survey Responders in a Pragmatic Clinical Trial.

Objective: Pragmatic trials often implement an intervention across a population of patients but require information unavailable at the population level that must be reported by a subset of patients. In this pragmatic clinical trial, we compared characteristics of seriously ill patients with those who completed a survey evaluating advance care planning across 3 academic health systems. Methods: A deliberate process including health system and external stakeholders and patients was used to design materials for and the approach to seriously ill patients. We developed a survey and conducted a multistep process to identify seriously ill primary care patients. We evaluated the relationships of age, gender, race and ethnicity, and vulnerability using the social vulnerability index in this population, and explored the representativeness of survey respondents compared with the underlying seriously ill population in terms of age, race and ethnicity, and vulnerability measured. Results: About 5% (8707 patients) of the primary care population was classified as seriously ill, 5351 were mailed a survey and 1100 provided survey responses. Hispanic and Black patients were younger than White patients, and Black and Hispanic patients were more vulnerable than White and Asian patients and patients of other races. Representativeness was high across age and race and ethnicity, although White and Hispanic patients were more likely to respond than Black and Asian patients and patients of other races. Vulnerability in the surveyed sample was nearly identical to the population. Conclusions: A tailored survey and recruitment strategy yielded a representative sample of seriously ill, largely older, primary care respondents in the context of a pragmatic clinical trial.