Although approximately half of patients with cancer receive symptom management and advance care planning (ACP), a new study reports that the percentage is much worse—only approximately 20%—for low-income and minority patients. The researchers note that this disparity results in not just reduced quality of life for the patients but also increased costs of care for individuals and overall.
The study found a slew of obstacles behind this imbalance, including inadequate time with clinicians, a lack of sufficient reimbursement, and social biases such as racism. “Yet few interventions address such disparate care,” wrote the researchers. The study appears in the Journal of Clinical Oncology (doi:10.1200/JCO.23.00309).
The randomized clinical trial was a collaboration between Unite Here Health (UHH) centers in Atlantic City, New Jersey, and Chicago, Illinois. UHH is an employer–union health fund that serves low-income and minority workers and their families.
The researchers developed a community advisory board and recruited 160 patients newly diagnosed with solid tumors and hematologic malignancies from the UHH membership who were considered to have poor health-related quality of life (HRQOL) and inadequate care. They called the program LEAPS (Lay Health Workers Educate, Engage, and Activate Patients to Share). They also included a study component that added patients with unaddressed health-related social needs (HRSNs).
The goal of the study was to evaluate the effectiveness of LEAPS in improving HRQOL outcomes. Patients self-reported their age, gender, race, ethnicity, education, and household income.
The median age of the patients was 58 years, and there were 83 females (51.8%). The study group included 82 Whites (51.3%), 47 Hispanics (29.4%), and 44 African Americans and other Blacks (27.5%). There were also two American Indians or Alaska Natives (1.3%), 31 Asians (19.4%), and one Native Hawaiian (0.6%). The annual household income for 127 of the patients (79.4%) was less than $35,000. Thirty-seven of the patients (23.1%) had breast cancer, and 64 of the patients (40.0%) had stage IV disease.
The patients were randomly assigned equally to a usual-care control group, which included outpatient oncology services and case management by a union-affiliated nurse, and to an intervention group, which comprised usual care plus access to a trained community health worker (CHW) for 12 months. The researchers ensured that the groups were similar in demographic and clinical variables.
The CHWs, who were bilingual and covered multiple languages, assisted participants with ACP, screened them for symptoms, and referred them to community-based resources for their individual HRSNs. Patients in the intervention group received weekly telephone calls for 4 months and then monthly calls for 1 year. ACP education in the preferred language of each patient was included.
The main end point evaluation was each patient’s