Development of a Community-Based Palliative Care Screening Tool for Underserved Older Adults With Chronic Illnesses

Abstract

Although they experience high rates of chronic illness, low-income minority communities have traditionally underutilized palliative care services compared to whites and those with higher incomes. One reason for this trend is lack of screening by community providers. We utilized a community-based participatory research approach to develop and implement an innovative multidomain palliative care screening tool in aging service agencies. Participants were aging service providers and clients in the East and Central Harlem neighborhoods of New York City, which are characterized by high poverty, largely African American and Latino populations, disproportionally high rates of chronic conditions, and limited health-care access. Screening tool development included reviewing existing measures and obtaining feedback from an expert panel, aging service providers, and older adults. We developed a 22-item tool covering 3 domains of palliative care need (physical symptoms, emotional concerns, and goals of care), which can be administered in 10 to 15 minutes. Sixteen providers at 2 aging service agencies were trained to use the tool over a 3-month pilot period. The tool showed evidence of feasibility of implementation, with 44 older adult clients screened. Providers reported high acceptability, 36% of clients screened positive, and the majority accepted referrals to outpatient palliative care clinics. The screening tool has the potential to increase palliative care utilization among underserved community-dwelling older adults and may improve their quality of life, potentially in communities worldwide. Future work should examine the psychometric proprieties of the tool, examine predictors of positive screens, explore its impact on clinical outcomes, and expand its reach.

Keywords: assessment; community-based; measurement; palliative care; screening; underserved.

Figure 1

Results of screening attempts.