Background Social determinants of health (SDH) greatly influence outcomes during the first year of treatment in rheumatoid arthritis, a disease similar to polyarticular juvenile idiopathic arthritis (pJIA). We investigated the correlation of community poverty level and other SDH with the persistence of moderate to severe disease activity and functional disability over the first year of treatment in pJIA patients enrolled in the Childhood Arthritis and Rheumatology Research Alliance Registry. Methods In this cohort study, unadjusted and adjusted generalized linear mixed effects models analyzed the effect of community poverty and other SDH on disease activity, using the clinical Juvenile Arthritis Disease Activity Score-10, and disability, using the Child Health Assessment Questionnaire, measured at baseline, 6, and 12 months. Results One thousand six hundred eighty-four patients were identified. High community poverty (≥20% living below the federal poverty level) was associated with increased odds of functional disability (OR 1.82, 95% CI 1.28-2.60) but was not statistically significant after adjustment (aOR 1.23, 95% CI 0.81-1.86) and was not associated with increased disease activity. Non-white race/ethnicity was associated with higher disease activity (aOR 2.48, 95% CI: 1.41-4.36). Lower self-reported household income was associated with higher disease activity and persistent functional disability. Public insurance (aOR 1.56, 95% CI 1.06-2.29) and low family education (aOR 1.89, 95% CI 1.14-3.12) was associated with persistent functional disability. Conclusion High community poverty level was associated with persistent functional disability in unadjusted analysis but not with persistent moderate to high disease activity. Race/ethnicity and other SDH were associated with persistent disease activity and functional disability.

Family caregivers play an essential role in supporting the health and well-being of older adults with dementia, a population projected to increase rapidly over the coming decades. Enrolling caregivers of people with dementia (PWD) in research studies is vital to generating the evidence necessary to support broader implementation of efficacious intervention programs in real-world care delivery, but a range of challenges impede recruitment and enrollment of sufficiently large and representative sample sizes. In this article, we characterize the challenges and lessons learned from recruiting caregivers of PWD to participate in a pilot randomized control trial. We utilize Bronfenbrenner's ecological model to categorize the challenges into three levels: individual (i.e., understanding caregivers’ time constraints and motivations), community (i.e., reaching underrepresented populations and accessing caregiver support groups) and institutional (i.e., obtaining informed consent and navigating research registries). We found that establishing rapport and maintaining flexibility with participants was crucial for motivating individuals to enroll in our study. Building trust with local communities by collaborating with support group leaders, appointing a co-investigator who is already embedded within a given community, and establishing equitable partnerships with organizations increased recruitment rates. At the institutional level, engaging experts in regulatory affairs and geriatrics may help overcome barriers in obtaining approval from institutional review boards. We also recommend using research registries of individuals who offer their contact information to researchers. The lessons learned from our research—including the challenges and potential solutions to overcome them—may promote more effective and efficient recruitment in future research.

Clinical trials for dementia caregivers have suffered from small sample sizes that lack adequate power to detect treatment benefits. Addressing these methodological shortcomings is contingent upon successful recruitment and enrollment of caregiver participants, but major barriers impede their participation in research. This presentation describes the lessons learned from recruiting and enrolling dementia caregivers into a pilot randomized controlled trial designed to help caregivers recognize and communicate about pain in dementia care recipients. Using Bronfenbrenner’s ecological model, we organize our discussion of challenges and opportunities into three levels: community (ecosystem), institution (microsystem), and individual. A key challenge at the community level was gatekeeping by organization leaders, including those from support groups, senior centers, and congregate living facilities. At the institutional-level, challenges included an absence of administrative mechanisms for identifying caregivers and a lack of caregiver research expertise on the Institutional Review Board. At the individual-level, challenges included time constraints and varying motivations for participating in research. Strategies for overcoming these challenges spanned the three levels and included establishing trust and rapport with various constituencies; adapting our recruitment approaches to meet the specific motivations of prospective participants; and refining recruitment scripts to allow for greater personalization. Employing these strategies, which can be generalized to recruit other hard-to-reach populations, helped to overcome recruitment challenges and expedite enrollment of caregivers from a diverse range of sociodemographic backgrounds. Further improvement will require coordinated changes at the institutional and community levels, including the development of central research registries and administrative mechanisms for identifying caregivers.