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.

Background: High-quality doctor-patient communication is essential for patients with serious illnesses. The reliability and validity of Consumer Assessment of Healthcare Providers and Systems (CAHPS Ò ) communication items among these patients are unknown. Methods: Five CAHPS communication items, a 4-item Advance Care Planning (ACP) engagement scale, 5-item confidence in others' knowledge of ACP medical wishes scale, and a question about confidence in filling out ACP-related medical forms were administered to 1100 patients (20% response rate) with serious illness receiving primary care at three University of California Health Systems. Results: Average age was 69 (range 22-102); 52% male, 18% Hispanic, 9% Asian, and 7% Black; 24% had high school or less education. Eigenvalues and internal consistency reliability (0.88) supported a 5-item communication scale. Item characteristic curves showed a monotonic relationship of response options with the communication score. Item thresholds indicated that most patients reported positive patient experiences (i.e., items were negatively skewed). Item slopes ranging from 2.52 to 5.10 confirmed that all items were strongly related to the communication score. Information (reliability) of the communication scale was higher for assessing patients with negative experiences of care than for the positive end of the spectrum. Communication was positively correlated with confidence in other's knowledge of ACP medical wishes (r = 0.32, p < 0.0001), ACP engagement (r = 0.14, p < 0.0001), and confidence in filling out ACP-related medical forms (r = 0.09, p = 0.0022). Conclusions: These findings support the use of CAHPS survey items to assess communication among patients with serious illnesses in primary care. Clinical Trial Registration: https://clinicaltrials.gov/ct2/show/NCT04012749