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BMC Medical Research Methodology
Published in: BMC Medical Research Methodology 1/2009

Open Access 01-12-2009 | Research article

Determinants of subject visit participation in a prospective cohort study of HTLV infection

Published in: BMC Medical Research Methodology | Issue 1/2009

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Abstract

Background

Understanding participation in a prospective study is crucial to maintaining and improving retention rates. In 1990–92, following attempted blood donation at five blood centers, we enrolled 155 HTLV-I, 387 HTLV-II and 799 HTLV seronegative persons in a long-term prospective cohort.

Methods

Health questionnaires and physical exams were administered at enrollment and 2-year intervals through 2004. To examine factors influencing attendance at study visits of the cohort participants we calculated odds ratios (ORs) with generalized estimated equations (GEE) to analyze fixed and time-varying predictors of study visit participation.

Results

There were significant independent associations between better visit attendance and female gender (OR = 1.31), graduate education (OR = 1.86) and income > $75,000 (OR = 2.68). Participants at two centers (OR = 0.47, 0.67) and of Black race/ethnicity (OR = 0.61) were less likely to continue. Higher subject reimbursement for interview was associated with better visit attendance (OR = 1.84 for $25 vs. $10). None of the health related variables (HTLV status, perceived health status and referral to specialty diagnostic exam for potential adverse health outcomes) significantly affected participation after controlling for demographic variables.

Conclusion

Increasing and maintaining participation by minority and lower socioeconomic status participants is an ongoing challenge in the study of chronic disease outcomes. Future studies should include methods to evaluate attrition and retention, in addition to primary study outcomes, including qualitative analysis of reasons for participation or withdrawal.
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Literature
1.
Moser D, Dracup K, Doering L: Factors Differentiating Dropouts from Completers in a Longitudinal, Multicenter Clinical Trial. Nursing Research. 2000, 49 (2): 109-116. 10.1097/00006199-200003000-00008.CrossRefPubMed
2.
Robinson KA, Dennison CR, Wayman DM, Pronovost PJ, Needham DM: Systematic review identifies number of strategies important for retaining study participants. J Clin Epidemiol. 2007, 60 (8): 757-765. 10.1016/j.jclinepi.2006.11.023.CrossRefPubMedPubMedCentral
3.
Ware R, Williams G, Aird R: Participants who left a multiple-wave cohort study had similar baseline characteristics to participants who returned. Annals of Epidemiology. 2006, 16 (11): 820-823. 10.1016/j.annepidem.2006.01.008.CrossRefPubMed
4.
Barry A: How Attrition Impacts the Internal and External Validity of Longitudinal Research. Journal of School Health. 2005, 75 (7): 267-270. 10.1111/j.1746-1561.2005.00035.x.CrossRefPubMed
5.
Goldberg M, Chastang JF, Zins M, Niedhammer I, Leclerc A: Health problems were the strongest predictors of attrition during follow-up of the GAZEL cohort. J Clin Epidemiol. 2006, 59 (11): 1213-1221. 10.1016/j.jclinepi.2006.02.020.CrossRefPubMed
6.
Taylor-Piliae RE, Froelicher ES: Methods to optimize recruitment and retention to an exercise study in Chinese immigrants. Nurs Res. 2007, 56 (2): 132-136. 10.1097/01.NNR.0000263971.46996.14.CrossRefPubMed
7.
Boys A, Marsden J, Stillwell G, Hatchings K, Griffiths P, Farrell M: Minimizing respondent attrition in longitudinal research: practical implications from a cohort study of adolescent drinking. Journal of adolescence. 2003, 26 (3): 363-373. 10.1016/S0140-1971(03)00011-3.CrossRefPubMed
8.
Williams PL, Van Dyke R, Eagle M, Smith D, Vincent C, Ciupak G, Oleske J, Seage GR: Association of site-specific and participant-specific factors with retention of children in a long-term pediatric HIV cohort study. American journal of epidemiology. 2008, 167 (11): 1375-1386. 10.1093/aje/kwn072.CrossRefPubMedPubMedCentral
9.
Marcellus L: Are we missing anything? Pursuing research on attrition. Canadian Journal of Nursing Research. 2004, 36 (3): 82-98.PubMed
10.
Murphy EL, Engstrom JW, Miller K, Sacher RA, Busch MP, Hollingsworth CG: HTLV-II associated myelopathy in 43-year-old woman. REDS Investigators. Lancet. 1993, 341 (8847): 757-758. 10.1016/0140-6736(93)90529-P.CrossRefPubMed
11.
Murphy EL, Wang B, Sacher RA, Fridey J, Smith JW, Nass CC, Newman B, Ownby HE, Garratty G, Hutching ST, et al: Respiratory and urinary tract infections, arthritis, and asthma associated with HTLV-I and HTLV-II infection. Emerg Infect Dis. 2004, 10 (1): 109-116.CrossRefPubMedPubMedCentral
12.
Orland JR, Engstrom J, Fridey J, Sacher RA, Smith JW, Nass C, Garratty G, Newman B, Smith D, Wang B, et al: Prevalence and clinical features of HTLV neurologic disease in the HTLV Outcomes Study. Neurology. 2003, 61 (11): 1588-1594.CrossRefPubMed
13.
Schreiber GB, Murphy EL, Horton JA, Wright DJ, Garfein R, Chien HC, Nass CC: Risk factors for human T-cell lymphotropic virus types I and II (HTLV-I and -II) in blood donors: the Retrovirus Epidemiology Donor Study. NHLBI Retrovirus Epidemiology Donor Study. J Acquir Immune Defic Syndr Hum Retrovirol. 1997, 14 (3): 263-271.CrossRefPubMed
14.
Kaplan JE, Khabbaz RF, Murphy EL, Hermansen S, Roberts C, Lal R, Heneine W, Wright D, Matijas L, Thomson R, et al: Male-to-female transmission of human T-cell lymphotropic virus types I and II: association with viral load. The Retrovirus Epidemiology Donor Study Group. J Acquir Immune Defic Syndr Hum Retrovirol. 1996, 12 (2): 193-201.CrossRefPubMed
15.
Murphy EL, Fridey J, Smith JW, Engstrom J, Sacher RA, Miller K, Gibble J, Stevens J, Thomson R, Hansma D, et al: HTLV-associated myelopathy in a cohort of HTLV-I and HTLV-II-infected blood donors. The REDS investigators. Neurology. 1997, 48 (2): 315-320.CrossRefPubMed
16.
Zuck TF, Thomson RA, Schreiber GB, Gilcher RO, Kleinman SH, Murphy EL, Ownby HE, Williams AE, Busch MP, Smith JW, et al: The Retrovirus Epidemiology Donor Study (REDS): rationale and methods. Transfusion. 1995, 35 (11): 944-951. 10.1046/j.1537-2995.1995.351196110900.x.CrossRefPubMed
17.
Murphy EL, Glynn SA, Fridey J, Sacher RA, Smith JW, Wright DJ, Newman B, Gibble JW, Ameti DI, Nass CC, et al: Increased prevalence of infectious diseases and other adverse outcomes in human T lymphotropic virus types I- and II-infected blood donors. Retrovirus Epidemiology Donor Study (REDS) Study Group. The Journal of infectious diseases. 1997, 176 (6): 1468-1475.CrossRefPubMed
18.
Eakin EG, Bull SS, Riley K, Reeves MM, Gutierrez S, McLaughlin P: Recruitment and retention of Latinos in a primary care-based physical activity and diet trial: The Resources for Health study. Health education research. 2007, 22 (3): 361-371. 10.1093/her/cyl095.CrossRefPubMed
19.
Gilliss CL, Lee KA, Gutierrez Y, Taylor D, Beyene Y, Neuhaus J, Murrell N: Recruitment and retention of healthy minority women into community-based longitudinal research. Journal of women's health & gender-based medicine. 2001, 10 (1): 77-85. 10.1089/152460901750067142.CrossRef
20.
Covell NH, Frisman LK, Essock SM: Rates of refusal to participate in research studies among men and women. Psychiatr Serv. 2003, 54 (11): 1541-1544. 10.1176/appi.ps.54.11.1541.CrossRefPubMed
21.
Hunt JR, White E: Retaining and tracking cohort study members. Epidemiologic reviews. 1998, 20 (1): 57-70.CrossRefPubMed
22.
Cartmel B, Moon TE, Levine N, Rodney S, Alberts D: Predictors of inactivation and reasons for participant inactivation during a skin cancer chemoprevention study. Cancer Epidemiol Biomarkers Prev. 2000, 9 (9): 999-1002.PubMed
23.
Shavers VL, Lynch CF, Burmeister LF: Factors that influence African-Americans' willingness to participate in medical research studies. Cancer. 2001, 91 (1 Suppl): 233-236. 10.1002/1097-0142(20010101)91:1+<233::AID-CNCR10>3.0.CO;2-8.CrossRefPubMed
24.
Kressin NR, Meterko M, Wilson NJ: Racial disparities in participation in biomedical research. Journal of the National Medical Association. 2000, 92 (2): 62-69.PubMedPubMedCentral
25.
O'Brien RL, Kosoko-Lasaki O, Cook CT, Kissell J, Peak F, Williams EH: Self-assessment of cultural attitudes and competence of clinical investigators to enhance recruitment and participation of minority populations in research. Journal of the National Medical Association. 2006, 98 (5): 674-682.PubMedPubMedCentral
26.
Yancey AK, Ortega AN, Kumanyika SK: Effective recruitment and retention of minority research participants. Annual review of public health. 2006, 27: 1-28. 10.1146/annurev.publhealth.27.021405.102113.CrossRefPubMed
27.
Steele W, Schreiber G, Guiltinan A, Nass C, Glynn S: The role of altruistic behavior, empathic concern and social responsibility motivation in blood donation behavior. Transfusion. 2008, 48 (1): 43-54. Epub 2007 Sep 24PubMed
28.
Bentley J, Thacker P: The influence of risk and monetary payment on the research participation decision making process. Journal of Medical Ethics. 2004, 30: 293-298. 10.1136/jme.2002.001594.CrossRefPubMedPubMedCentral
29.
Given BA, Keilman LJ, Collins C, Given CW: Strategies to minimize attrition in longitudinal studies. Nursing Research. 1990, 39 (3): 184-186. 10.1097/00006199-199005000-00018.CrossRefPubMed
30.
Marmor JK, Oliveria SA, Donahue RP, Garrahie EJ, White MJ, Moore LL, Ellison RC: Factors encouraging cohort maintenance in a longitudinal study. Journal of Clinical Epidemiology. 1991, 44 (6): 531-535. 10.1016/0895-4356(91)90216-V.CrossRefPubMed
31.
Freedman D, Thornton A, Camburn D: Maintaining Response Rates in Longitudinal Studies. Sociological Methods and Research. 1980, 9 (1): 87-98. 10.1177/004912418000900104.CrossRef
32.
Menendez E, White MC, Tulsky JP: Locating study subjects: predictors and successful search strategies with inmates released from a U.S. county jail. Control Clinical Trials. 2001, 22 (3): 238-247. 10.1016/S0197-2456(01)00133-7.CrossRef
33.
Lyons KS, Carter JH, Carter EH, Rush KN, Stewart BJ, Archbold PG: Locating and retaining research participants for follow-up studies. Research in nursing & health. 2004, 27 (1): 63-68. 10.1002/nur.20001.CrossRef
34.
Tansey CM, Matte AL, Needham D, Herridge MS: Review of retention strategies in longitudinal studies and application to follow-up of ICU survivors. Intensive care medicine. 2007, 33 (12): 2051-2057. 10.1007/s00134-007-0817-6.CrossRefPubMed
Metadata
Title
Determinants of subject visit participation in a prospective cohort study of HTLV infection
Publication date
01-12-2009
Published in
BMC Medical Research Methodology / Issue 1/2009
Electronic ISSN: 1471-2288
DOI
https://doi.org/10.1186/1471-2288-9-19

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