Mixed-methods research to assess care coordination experiences among NCORP clinical trial participants.

Abstract

168 Background: According to the Institute of Medicine, care coordination (CC) is a critical component of high-quality cancer care; however, many patients with cancer continue to experience fragmented care. CC experiences among cancer clinical trial (CT) participants are relatively unknown. Using mixed methods, we examined perceptions of CC among patients enrolled on therapeutic CTs conducted through the Hawaii Minority/Underserved NCI Community Oncology Research Program (NCORP). Methods: Forty-five CT participants completed the validated Care Coordination Instrument (CCI). The CCI assesses cancer patients’ perceptions of CC overall and across Communication, Navigation, and Operational domains. Data from 45 non-CT participants matched by age, gender, cancer type (breast, GI, other), and clinical stage from our prior studies served as a control group. Paired t-tests were used to compare the CCI scores between the two groups. Three semi-structured focus group interviews were conducted with 14 CT participants in 2020 and 2021. Results: The mean age of CT participants was 61.7 ( SD = 9.4), with the majority being female (67%) and Asian (56%). The most common cancer disease sites were breast (27%) and GI (16%). CT participants reported significantly higher total CC scores than non-participants ( p =.0008). Similar trends were found for Navigation ( p =.007) and Operational ( p =.001) domain scores. 56% of CT participants reported receiving moderate to high-intensity CC assistance from their clinical research professionals (CRPs). Content analysis of focus group discussions revealed that the majority of CT participants’ comments aligned with CC domains; 42% Communication, 30% Navigation, and 28% Operational. Nearly half of focus group discussions centered on CRPs (47%), including CC support provided by CRPs (26%). Other key themes that emerged from the focus groups included general CT experiences (22%) and CRP involvement as an additional benefit to CT participation (15%). Conclusions: Clinical trial participants perceive better CC than non-CT participants, partly attributed to CC support provided by CRPs. Our findings highlight a generally unrecognized yet integral role of CRPs as part of a cancer clinical trial care team. CRP involvement may be an additional benefit of CT participation and contribute to improved quality and value for patient-centered cancer care.