Feasibility of a Patient-Reported Outcomes Quality of Life Instrument to Improve Care in Underserved, Ethnic Minority Cancer Patients

Background A better understanding of social determinants of health and psychosocial and economic sequelae of cancer for an ethnoculturally diverse population is needed. A Patient-Reported Outcomes Quality of Life (PROQOL) instrument has been developed to capture less commonly discussed patient concerns. We sought to adapt this instrument and pilot it in underserved, ethnic minority cancer patients at Maricopa Integrated Health System (MIHS) in Phoenix, AZ. Methods Two focus groups (FG) were conducted to understand patient perspectives of an adapted Spanish version of PROQOL. A revised version based on FG data was then piloted among patients on active cancer treatment. Patients also completed a Linear Analog Scale Assessment (from 1-10) for quality of life (QOL) and its domains. Results All participants in both FG (11/12 female) were Hispanic, with a median age of 53 years. Participants agreed that the domains covered in the PROQOL represented the most important psychosocial needs in their cancer continuum. No difficulty in understanding the individual domains or questions for delving deeper into each domain was noted. Median age of 34 pilot study participants (74% female, 79% Hispanic) was 48 years. 28/34 completed the Spanish version. The most common concerns were ‘Money’ (32%) and ‘Cancer Diagnosis, Treatment and Survivorship’ (32%). Median overall QOL was 8 (range 3-10). Conclusions PROQOL is feasible for systematic capture of patient concerns in underserved, ethnic minority cancer patients. A better understanding of these concerns can help design interventions to improve psychosocial outcomes for the vulnerable groups and decrease disparities in care delivery.