Better communication is key for quality-of-life improvement in low-income and minority patients

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 change in HRQOL from enrollment at 4 months and again at 12 months. Also noted were patient activation, satisfaction with decision, emergency department and hospital use, ACP documentation, overall survival, and total costs.

Although the usual-care and intervention groups had similar HRQOL scores at the baseline, at 4 months, the control group’s score had declined by 3 points, and the intervention group’s score had increased by 7 points. At 12 months, the usual-care group’s score had further declined 1 point, and the intervention group’s score had further increased by 11 points. The researchers also found that the intervention group had a greater increase in mean HRQOL scores.

Reported secondary outcomes included patient activation, satisfaction with decision, ACP documentation, health care use, total health care costs, and overall survival. Among the secondary outcomes, after 4 months, the intervention group “strongly agreed” that they felt adequately informed, that their decisions were the best possible, that their personal values were fulfilled and honored, that they were consulted about and participated in care decisions, and that overall they were satisfied with decisions in comparison with the usual-care group. Similar results were reported after 12 months.

“While community health workers are not novel in their integration into other aspects of care, the way we created the intervention to address advance care planning, screening of symptoms, and screening of and addressing any identified health-related social needs is a unique approach in cancer care delivery that has not been conducted before,” says lead study author Manali I. Patel, MD, MPH, from the Division of Oncology at Stanford University in Palo Alto, California.

Dr Patel also notes that the use of community-based participatory research to redesign cancer care for hourly, low-wage labor union workers “is likely why the study was so effective in achieving the primary and secondary endpoints.”

“The work was hard,” says Dr Patel, “and required a lot of time to build relationships, adapt our previously tested and effective intervention, and integrate new aspects of the intervention. The many years of hard work, however, resulted in improved health-related quality of life, reduced acute care use, and reduced total health care spending.”

“Study results were impressive,” writes Kerin Adelson, MD, from the University of Texas MD Anderson Cancer Center in Houston, Texas, and Gabrielle Rocque, MD, from the University of Alabama at Birmingham and the O’Neal Comprehensive Cancer Center in Birmingham, who wrote an editorial accompanying the study (doi:10.1200/JCO.23.01723). “Intervention patients had significantly improved health-related QOL [quality of life], reduced frequency of emergency department and hospital use, and lower total cost of care than the usual care arm.”

Bonny Morris, PHD, MSPH, RN, senior director of navigation at the American Cancer Society in Charlotte, North Carolina, says that this study provides further evidence that there is a compelling human and business case to be made for implementing patient navigation programs. “Compared with the control group, patients randomly assigned to the CHW intervention had clinically meaningful higher HRQoL and lower unplanned healthcare utilization, leading to markedly lower total health care costs.”

Dr Morris notes, “Proactive symptom monitoring with a triage pathway to the clinical team and advance care planning education led to improved HRQoL, and to care that was concordant with goals of care, with fewer hospital visits, and with higher use of palliative and hospice care in the last 30 days of life among intervention participants as compared with those assigned to usual care. Proactive symptom monitoring, ACP education, and HRSN screening can be successfully provided by professionals without a clinical license and accomplished remotely (via telephone).” Dr Morris also notes that, with the January 1 release of the Centers for Medicare & Medicaid Services Physician Fee Schedule, these are now also reimbursable activities under Principal Illness Navigation.

“Despite the evidence from extensive literature that documents the impact of patient navigation on improving access to care and reducing cancer disparities,” says Dr Morris, “inconsistent or lack of sustainable funding and navigator training has led to a wide variation in the availability and delivery of navigation. This study defines intervention components with clear ROI [return on investment] that can be built into navigation programs.”

Dr Patel says that to address health equity, interventions must be intentionally designed and involve bidirectional collaboration with multilevel stakeholders. “Through deep collaboration with health care payers, patients and their caregivers, community-based organizations, and clinicians, we were able to design a novel approach in which we integrated trained, trusted community members into care delivery for patients with cancer.”

“Assigning a patient a CHW alone is not a magic bullet for overcoming all of the ills in health care,” warn Dr Adelson and Dr Rocque. “CHWs focused their time on proactive symptom screening, advanced care planning, and community resource navigation. The incorporation of these elements into one intervention builds on concepts shown to be effective in previous trials.”

Dr Patel says that the intervention now is being deployed as part of usual care for the payer organization. “This, we believe, is a testament to the deep community engagement that we intentionally sought to achieve.”