Predictors of Response Outcomes for Research Recruitment Through a Central Cancer Registry: Evidence From 17 Recruitment Efforts for Population-Based Studies

• Published in: American journal of epidemiology Vol. 188; no. 5; pp. 928 - 939
• Main Authors: Millar, Morgan M, Kinney, Anita Y, Camp, Nicola J, Cannon-Albright, Lisa A, Hashibe, Mia, Penson, David F, Kirchhoff, Anne C, Neklason, Deborah W, Gilsenan, Alicia W, Dieck, Gretchen S, Stroup, Antoinette M, Edwards, Sandra L, Bateman, Carrie, Carter, Marjorie E, Sweeney, Carol
• Format: Journal Article
• Language: English
• Published: United States Oxford University Press 01.05.2019; Oxford Publishing Limited (England)
• Subjects: Adolescents; Adult; Age Factors; Aged; Aged, 80 and over; Biomedical materials; Bone cancer; Breast; Breast cancer; Brochures; Children; Chronic lymphocytic leukemia; Colon; Colon cancer; Colorectal cancer; Colorectal carcinoma; Confidence intervals; Continental Population Groups - statistics & numerical data; Cooperation; Epidemiologic Methods; Epidemiology; Female; Gene sequencing; Genes; Head & neck cancer; Health risks; Heredity; Humans; Incentives; Leukemia; Logistic Models; Lymphatic leukemia; Male; Middle Aged; Multiple myeloma; Neoplasms - epidemiology; Odds Ratio; Osteosarcoma; Patient Selection; Pedigree; Population studies; Population-based studies; Postage stamps; Practice of Epidemiology; Prostate cancer; Race; Registries - statistics & numerical data; Regression analysis; Research design; Research Subjects - statistics & numerical data; Residence Characteristics; Risk assessment; Risk Factors; Sarcoma; Socioeconomic Factors; Statistical analysis; Surgery; Surveillance; Thyroid; Thyroid cancer; Thyroid carcinoma; Utah - epidemiology; Young adults; Utah; United States > US; methods; patient participation rates; research subject recruitment; registries; neoplasms; surveys and questionnaires; epidemiologic research design
• ISSN: 0002-9262; 1476-6256; 1476-6256
• DOI: 10.1093/aje/kwz011

Abstract 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.