Patients' experiences with 'sludge' (administrative burden) in the cancer screening process and its relationship with screening completion, experience and health system distrust.

Objective: 'Sludge' refers to administrative burdens or frictions that preclude people from getting what they want or need (eg, duplicative forms, complicated instructions, long waiting times). This mixed methods study evaluated patients' perceptions of sludge in the colorectal cancer (CRC) screening process and some impacts of this sludge.

Design: We employed an exploratory sequential mixed methods study design that comprised patient interviews and a patient survey. The interviews informed final survey revisions and captured contextual data about patients' experiences with sludge. Interview transcripts were inductively and deductively analysed to identify overarching themes. The survey quantified sludge, delayed or forgone screenings, screening experience (Net Promoter Score) and health system distrust (Health System Distrust Scale). We used χ² or t-tests for univariable comparisons and logistic or linear regressions to evaluate the association between cumulative sludge score and delayed or forgone screenings, screening experience and health system distrust. Results were integrated for interpretation.

Setting: Southeastern United States.

Participants: Patients who were 45-75 years of age, at average risk for CRC and had either completed or been referred for CRC screening (colonoscopy or stool-based test) within the previous 12 months.

Results: 22 interview participants and 255 survey participants completed the study. 38 (15%) survey participants rated their screening experience as poor (Net Promoter Score=0-7 out of 10). The mean (SD) Health System Distrust Scale score was 22.4 (6.3) out of 45 possible points (higher score=greater distrust). Perceptions of sludge in the CRC screening process varied, with long waiting times and burdensome communication being the most common sources (58% and 35% of participants, respectively). Sludge was positively associated with delayed or forgone screenings (OR=1.42, 95% CI 1.28, 1.57, p<0.001), poor screening experience (OR=1.15, 95% CI 1.04, 1.28, p=0.009) and health system distrust (β=0.47, p<0.001). Qualitative findings add descriptive detail about sludge encountered, context to impacts experienced, and illustrate the heavy emotional impact of sludge: 'it just isn't worth it'.

Conclusion: Efforts to reduce sludge in the CRC screening process may improve timely completion of CRC screening, enhance patient experience and restore trust in the health system.