TY - JOUR
T1 - Predictors of Response Outcomes for Research Recruitment through a Central Cancer Registry
T2 - Evidence from 17 Recruitment Efforts for Population-Based Studies
AU - Millar, Morgan M.
AU - Kinney, Anita Y.
AU - Camp, Nicola J.
AU - Cannon-Albright, Lisa A.
AU - Hashibe, Mia
AU - Penson, David F.
AU - Kirchhoff, Anne C.
AU - Neklason, Deborah W.
AU - Gilsenan, Alicia W.
AU - Dieck, Gretchen S.
AU - Stroup, Antoinette M.
AU - Edwards, Sandra L.
AU - Bateman, Carrie
AU - Carter, Marjorie E.
AU - Sweeney, Carol
N1 - Funding Information:
This work was supported by the National Cancer Institute at the National Institutes of Health (grants R01CA134674, R01CA163353, and R21CA152336 to N.J.C.; R01CA164138 to L.A.C-A. and S.V. Tavtigian; R21CA185811 to M.H.; R01CA125194-0305 and 1R01CA129142 to A.Y.K.; R21CA205796 to D.W.N.; and P30CA042014 to the Shared Resources at the Huntsman Cancer Institute); the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program (contract HHSN261201300017I to the Utah Cancer Registry); the National Institute of Dental and Craniofacial Research at the National Institutes of Health (grant R01DE023414 to M.H.); the Agency for Healthcare Research and Quality at the National Institutes of Health (grants 1R01HS019356 and 1R01HS022640 to D.F.P.); the Patient-Centered Outcomes Research Institute (contract CE12-11-4667 to D.F.P.); Eli Lilly & Company (to RTI Health Solutions); the Centers for Disease Control and Prevention’s National Program of Cancer Registries (cooperative agreement NU58DP0063200-01 to the Utah Cancer Registry); the University of Utah Department of Pediatrics (to A.C.K.); the Huntsman Cancer Institute’s Cancer Control and Population Sciences Pilot Grant Program (to A.C.K.); Primary Children’s Medical Foundation Career Development Award (to A.C.K.); and the Huntsman Cancer Foundation (to the Utah Cancer Registry). We thank the Utah Cancer Registry study coordinators, who contacted cancer cases for these studies, and C. Janna Harrell, who created the initial tracking database utilized by the registry, all of whose efforts made this study possible. A.W.G. also thanks Kirk Midkiff and David Harris for their leadership and conduct of the RTI study.
Publisher Copyright:
© 2019 The Author(s).
PY - 2019/5/1
Y1 - 2019/5/1
N2 - When recruiting research participants through central cancer registries, high response fractions help ensure population-based representation. We conducted multivariable mixed-effects logistic regression to identify case and study characteristics associated with making contact with and obtaining cooperation of Utah cancer cases using data from 17 unique recruitment efforts undertaken by the Utah Cancer Registry (2007-2016) on behalf of the following studies: A Population-Based Childhood Cancer Survivors Cohort Study in Utah, Comparative Effectiveness Analysis of Surgery and Radiation for Prostate Cancer (CEASAR Study), Costs and Benefits of Follow-up Care for Adolescent and Young Adult Cancers, Study of Exome Sequencing for Head and Neck Cancer Susceptibility Genes, Genetic Epidemiology of Chronic Lymphocytic Leukemia, Impact of Remote Familial Colorectal Cancer Risk Assessment and Counseling (Family CARE Project), Massively Parallel Sequencing for Familial Colon Cancer Genes, Medullary Thyroid Carcinoma (MTC) Surveillance Study, Osteosarcoma Surveillance Study, Prostate Cancer Outcomes Study, Risk Education and Assessment for Cancer Heredity Project (REACH Project), Study of Shared Genomic Segment Analysis and Tumor Subtyping in High-Risk Breast-Cancer Gene Pedigrees, Study of Shared Genomic Segment Analysis for Localizing Multiple Myeloma Genes. Characteristics associated with lower odds of contact included Hispanic ethnicity (odds ratio (OR) = 0.34, 95% confidence interval (CI): 0.27, 0.41), nonwhite race (OR = 0.46, 95% CI: 0.35, 0.60), and younger age at contact. Years since diagnosis was inversely associated with making contact. Nonwhite race and age ≥60 years had lower odds of cooperation. Study features with lower odds of cooperation included longitudinal design (OR = 0.50, 95% CI: 0.41, 0.61) and study brochures (OR = 0.70, 95% CI: 0.54, 0.90). Increased odds of cooperation were associated with including a questionnaire (OR = 3.19, 95% CI: 1.54, 6.59), postage stamps (OR = 1.60, 95% CI: 1.21, 2.12), and incentives (OR = 1.62, 95% CI: 1.02, 2.57). Among cases not responding after the first contact, odds of eventual response were lower when >10 days elapsed before subsequent contact (OR = 0.71, 95% CI: 0.59, 0.85). Obtaining high response is challenging, but study features identified in this analysis support better results when recruiting through central cancer registries.
AB - When recruiting research participants through central cancer registries, high response fractions help ensure population-based representation. We conducted multivariable mixed-effects logistic regression to identify case and study characteristics associated with making contact with and obtaining cooperation of Utah cancer cases using data from 17 unique recruitment efforts undertaken by the Utah Cancer Registry (2007-2016) on behalf of the following studies: A Population-Based Childhood Cancer Survivors Cohort Study in Utah, Comparative Effectiveness Analysis of Surgery and Radiation for Prostate Cancer (CEASAR Study), Costs and Benefits of Follow-up Care for Adolescent and Young Adult Cancers, Study of Exome Sequencing for Head and Neck Cancer Susceptibility Genes, Genetic Epidemiology of Chronic Lymphocytic Leukemia, Impact of Remote Familial Colorectal Cancer Risk Assessment and Counseling (Family CARE Project), Massively Parallel Sequencing for Familial Colon Cancer Genes, Medullary Thyroid Carcinoma (MTC) Surveillance Study, Osteosarcoma Surveillance Study, Prostate Cancer Outcomes Study, Risk Education and Assessment for Cancer Heredity Project (REACH Project), Study of Shared Genomic Segment Analysis and Tumor Subtyping in High-Risk Breast-Cancer Gene Pedigrees, Study of Shared Genomic Segment Analysis for Localizing Multiple Myeloma Genes. Characteristics associated with lower odds of contact included Hispanic ethnicity (odds ratio (OR) = 0.34, 95% confidence interval (CI): 0.27, 0.41), nonwhite race (OR = 0.46, 95% CI: 0.35, 0.60), and younger age at contact. Years since diagnosis was inversely associated with making contact. Nonwhite race and age ≥60 years had lower odds of cooperation. Study features with lower odds of cooperation included longitudinal design (OR = 0.50, 95% CI: 0.41, 0.61) and study brochures (OR = 0.70, 95% CI: 0.54, 0.90). Increased odds of cooperation were associated with including a questionnaire (OR = 3.19, 95% CI: 1.54, 6.59), postage stamps (OR = 1.60, 95% CI: 1.21, 2.12), and incentives (OR = 1.62, 95% CI: 1.02, 2.57). Among cases not responding after the first contact, odds of eventual response were lower when >10 days elapsed before subsequent contact (OR = 0.71, 95% CI: 0.59, 0.85). Obtaining high response is challenging, but study features identified in this analysis support better results when recruiting through central cancer registries.
KW - epidemiologic research design
KW - methods
KW - neoplasms
KW - patient participation rates
KW - registries
KW - research subject recruitment
KW - surveys and questionnaires
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U2 - 10.1093/aje/kwz011
DO - 10.1093/aje/kwz011
M3 - Article
C2 - 30689685
AN - SCOPUS:85065540066
SN - 0002-9262
VL - 188
SP - 928
EP - 939
JO - American Journal of Epidemiology
JF - American Journal of Epidemiology
IS - 5
ER -