Recruitment and retention of the Hardest-to-Reach families in community-based asthma interventions.

Abstract

Engaging underserved populations in research requires substantial effort for recruitment and retention. The objective of this study is to describe the effort needed to recruit and retain urban participants in pediatric asthma studies and to characterize the Hardest-to-Reach group by demographics and asthma severity. We included 311 children (3-10 years) with persistent asthma enrolled in two school-based asthma interventions in Rochester, NY. Contact logs were collected at four time points (baseline, 2 month, 4 month, 6 month). We defined "Hardest-to-Reach" (vs "Easier-to-Reach") as being unable to reach a family by telephone at any given contact attempt due to disconnected or wrong numbers. Chi-square and Mann-Whitney tests were used to compare groups. Overall, we enrolled 311 children (60% Black, 29% Hispanic, 70% Medicaid, response rate 70%). On average, 3.1 contact attempts were required for recruitment (range 1-15), and 35% required rescheduling at least once for the enrollment visit. All but 12 participants completed each follow-up (retention rate = 96%). Completion of follow-ups required an average of 7.6 attempts; we considered 38% of caregivers "Hardest-to-Reach." Caregivers in the Hardest-to-Reach group were slightly younger (33 vs 36 years, p = 0.007) with more depressive symptoms (41% vs 29%, p = 0.035) and smokers in the home (59% vs 48%, p = 0.048). Furthermore, more of the Hardest-to-Reach children had moderate-severe versus mild persistent asthma (64% vs 52%, p = 0.045). Importantly, even the Easier-to-Reach families required many contact attempts, with 52% having >5 attempts for at least one follow-up. In conclusion, we found that among an already vulnerable population, the Hardest-to-Reach families demonstrated higher risk and had children with significantly worse asthma. This study highlights the importance of persistence in reaching those in greatest need.