Patients' willingness to participate in symptom‐related and disease‐modifying research

Abstract

BACKGROUND. The growth of cancer symptom management research has been limited by challenges of slow recruitment and underenrollment. One potential solution to this problem is the use of screening questions that identify patients who are interested in participating in research. The goal of this study was to evaluate this strategy in patients with cancer. METHODS. Two screening questions (for symptom management research and disease-modifying research) were integrated into the intake process of the palliative care clinic of an urban Veteran's Administration medical center. A chart review was conducted to extract patients' reported willingness to be recruited for research, explanations for their responses, demographic data, Memorial Symptom Assessment Scale Global Distress Index (GDI) subscale scores, and Eastern Cooperative Oncology Group performance score. RESULTS. Charts were reviewed for the first 100 patients seen for a palliative care clinic visit, 86 of whom had cancer. Patients were less likely to be interested in symptom-related research than in disease-modifying research (32 of 86 [37%] vs. 46 of 86 [54%]; sign test, P = 0.009). Patients' interest in each type of research was associated moderately (kappa = 0.41; P < 0.001). Independent predictors of interest in symptom management research included younger age, white race, and a lower GDI symptom distress score. Independent predictors of interest in disease modifying research included only younger age and white race. CONCLUSIONS. Screening questions may be useful in identifying patients who are willing to be recruited for research. However, further study is needed to evaluate this process in other populations, as well as to determine whether screening questions introduce selection bias in the recruitment process.