Puja J Umaretiya1,2,3,4,5, Maya Ilowite1,3,5, Lauren Fisher2, Marie Bakitas6, Erin R Currie6, Stephanie Gilbertson-White7, Lisa Lindley8, Eric J Roeland9, Jennifer W Mack1,2,3,5, Kira Bona1,2,3,5. 1. Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA. 2. Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts, USA. 3. Division of Pediatric Hematology/Oncology, Boston Children's Hospital, Boston, Massachusetts, USA. 4. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA. 5. Harvard Medical School, Boston, Massachusetts, USA. 6. School of Nursing, University of Alabama at Birmingham, Birmingham, Alabama, USA. 7. Department of Nursing, University of Iowa, Iowa City, Iowa, USA. 8. College of Nursing, University of Tennessee, Knoxville, Tennessee, USA. 9. Division of Hematology/Oncology, Knight Cancer Institute, Oregon Health and Sciences University, Portland, Oregon, USA.
Abstract
Background: Our previous study to understand end-of-life care of adolescents and young adults (AYAs) had a suboptimal survey response rate by bereaved caregivers. Objective: To identify sociodemographic factors associated with caregiver nonparticipation. Design/Setting/Subjects: Post hoc analysis of a retrospective multicenter cohort study of caregivers of deceased AYAs from 2013 to 2016. Measurements: Exposures: race, ethnicity, area-, and household-poverty. Primary outcome: survey participation. Secondary outcomes: loss to follow-up at each recruitment step. Results: Thirty-five of 263 eligible caregivers participated in the survey (13.3%). Caregivers of AYAs living in high-poverty zip codes were significantly more likely to have a disconnected or incorrect phone number (odds ratio [OR] 2.12; 95% confidence interval [CI] 1.04-4.58; p = 0.03). Caregivers of nonwhite AYAs were significantly less likely to participate (OR 0.35; 95% CI 0.12-0.87; p = 0.01). Conclusions: Caregivers of patients living in poverty are less likely to be reached by traditional recruitment efforts. Caregivers of racial/ethnic minority patients are less likely to participate overall.
Background: Our previous study to understand end-of-life care of adolescents and young adults (AYAs) had a suboptimal survey response rate by bereaved caregivers. Objective: To identify sociodemographic factors associated with caregiver nonparticipation. Design/Setting/Subjects: Post hoc analysis of a retrospective multicenter cohort study of caregivers of deceased AYAs from 2013 to 2016. Measurements: Exposures: race, ethnicity, area-, and household-poverty. Primary outcome: survey participation. Secondary outcomes: loss to follow-up at each recruitment step. Results: Thirty-five of 263 eligible caregivers participated in the survey (13.3%). Caregivers of AYAs living in high-poverty zip codes were significantly more likely to have a disconnected or incorrect phone number (odds ratio [OR] 2.12; 95% confidence interval [CI] 1.04-4.58; p = 0.03). Caregivers of nonwhite AYAs were significantly less likely to participate (OR 0.35; 95% CI 0.12-0.87; p = 0.01). Conclusions: Caregivers of patients living in poverty are less likely to be reached by traditional recruitment efforts. Caregivers of racial/ethnic minority patients are less likely to participate overall.
Entities:
Keywords:
disparities; ethnicity; poverty; race; research participation; socioeconomic status
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