Obtaining follow-up interviews for treatment evaluation

Desmond, David P.; Maddux, James F.; Johnson, Thomas H.; Confer, Beth A.

doi:10.1016/0740-5472(94)00076-4

Cited by 89 publications

(64 citation statements)

References 11 publications

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“…Two studies provided payments of $10USD or $20USD to family or friends for assistance in finding difficult to find study participants [35;39] and one reported a supplemental payment of $5 for resistant participants [52]. Finally, one study paid $5 for each urine sample provided [39]. The retention rate for those studies that reported using financial incentives was higher than for studies not reporting using financial incentives (mean 88% versus 85%, p=0.9).…”

Section: Synthesis Of Retention Strategiesmentioning

confidence: 99%

Systematic review identifies number of strategies important for retaining study participants

Robinson

Dennison

Wayman

et al. 2007

Journal of Clinical Epidemiology

208

248

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Objective-Loss to follow-up threatens internal and external validity yet little research has examined ways to limit participant attrition. We conducted a systematic review of studies with a primary focus on strategies to retain participants in health care research.Study Design-We completed searches of PubMed, CINAHL, CENTRAL, Cochrane Methodology Register, and EMBASE (August 2005). We also examined reference lists of eligible articles and relevant reviews. A data-driven thematic analysis of the retention strategies identified common themes.Results-We retrieved 3,068 citations, 21 studies were eligible for inclusion. We abstracted 368 strategies and from these identified 12 themes. The studies reported a median of 17 strategies across a median of six themes. The most commonly reported strategies were systematic methods of participant contact and scheduling. Studies with retention rates lower than the mean rate (86%) reported fewer strategies. There was no difference in the number of themes used.Conclusion-Available evidence suggests that investigators should consider using a number of retention strategies across several themes to maximize the retention of participants. Further research, including explicit evaluation of the effectiveness of different strategies, is needed. Keywords patient participation; patient dropouts; in-person follow-up; follow-up studies; cohort studies; systematic review Loss to follow-up of research participants threatens the internal and external validity of a study [1;2]. The study results may be biased by differential dropout between comparison groups or Corresponding Author: Karen A. Robinson, Internal Medicine and Health Sciences Informatics, Medicine, Johns Hopkins University, 1830 East Monument Street, Room 8069, Baltimore, MD 21287, 410-502-9216 (voice), 410-955-0825 (fax), krobin@jhmi.edu Publisher's Disclaimer: This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final citable form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. . They elicited perceived barriers to participant retention and 61 retention strategies from the project staff and investigators from these trials. The retention strategies were categorized into eight themes which study personnel then ranked based on perceived effectiveness. The strategy category of flexibility followed by incentives, benefits and persistence were rated as most effective by the study personnel. NIH Public AccessDavis et al (2002) completed a review of trials between 1990 and 1999 identifying 21 studies that included a description of retention strategies and retention rates [6]. The authors provided a table listing the trials rank-ordered based on the retention rate (specifics not pro...

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Section: Synthesis Of Retention Strategiesmentioning

confidence: 99%

Systematic review identifies number of strategies important for retaining study participants

Robinson

Dennison

Wayman

et al. 2007

Journal of Clinical Epidemiology

208

248

View full text Add to dashboard Cite

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“…Even when they can be adequately sampled, disadvantaged subjects are at high risk of nonresponse in follow-up studies (13,14). Researchers report low rates of follow-up among drug users (15)(16)(17), low-income minority parents (3,18), women at risk for HIV infection (19), the homeless mentally ill (14), and youth engaged in crime and delinquency (13,20).…”

Section: Nonresponse In Disadvantaged Populationsmentioning

confidence: 99%

“…At the baseline interview, we asked respondents for a list of family members or friends who could help us to stay in contact after prison release. Similar protocols were used elsewhere (13,15,37). The list of secondary contacts was updated at each interview, sometimes adding new names or new phone numbers for existing contacts.…”

Section: Study Retention In a Cohort Of Prison Releaseesmentioning

confidence: 99%

Study retention as bias reduction in a hard-to-reach population

Western

Braga

Hureau

et al. 2016

Proc. Natl. Acad. Sci. U.S.A.

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Collecting data from hard-to-reach populations is a key challenge for research on poverty and other forms of extreme disadvantage. With data from the Boston Reentry Study (BRS), we document the extreme marginality of released prisoners and the related difficulties of study retention and analysis. Analysis of the BRS data yields three findings. First, released prisoners show high levels of "contact insecurity," correlated with social insecurity, in which residential addresses and contact information change frequently. Second, strategies for data collection are available to sustain very high rates of study participation. Third, survey nonresponse in highly marginal populations is strongly nonignorable, closely related to social and economic vulnerability. The BRS response rate of 94% over a 1-y follow-up period allows analysis of hypothetically high nonresponse rates. In this setting, nonresponse attenuates regression estimates in analyses of housing insecurity, drug use, and unemployment. These results suggest that in the analysis of very poor and disadvantaged populations, methods that maximize study participation reduce bias and yield data that can usefully supplement large-scale household or administrative data collections. Under current conditions of historically high imprisonment rates, incarceration has become a regular part of the hardship associated with American poverty (4, 5). Men and women who go to prison present a range of co-occurring disadvantages and vulnerabilities that make them difficult to contact or unwilling to participate in research studies. Involvement in crime and the criminal justice system also makes study subjects elusive for researchers. As a result, follow-up studies of the formerly incarcerated have suffered from high rates of attrition that are likely correlated with outcomes of key interest. The incarcerated population has been called "invisible men" because of their underenumeration in social survey estimates of socioeconomic well-being (6). Because of their deep marginality in social and economic life, invisibility in social science data collection also extends to those who have moved from incarceration to communities.We explore survey nonresponse in a highly disadvantaged population using data from the Boston Reentry Study (BRS), a small longitudinal survey of newly released prisoners. Earlier longitudinal studies of released prisoners suffered from 30% to 60% attrition over a 1-to 2-y follow-up period (7,8). In contrast, the BRS followed Massachusetts state prisoners through the first year of prison release, achieving a response rate of 94%.The unusually high response rate allows us to explore three main challenges to research and data collection in highly disadvantaged populations. First, we document extreme social insecurity in the BRS sample that is closely associated with a high level of contact insecurity-the frequent changing of residential addresses and phone numbers that makes nonresponse more likely. Second, we describe a variety of strategies for data collection tha...

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“…Additionally, research teams may need to assist participants with locating computer and web access when participants are mobile. As always, research teams need to be patient, persistent, and creative to achieve high follow-up rates [49][50][51].…”

Section: Discussionmentioning

confidence: 99%

How Feasible is Multiple Time Point Web-Based Data Collection with Individuals Experiencing Street Homelessness?

Eyrich‐Garg

Moss

2017

J Urban Health

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Three barriers investigators often encounter when conducting longitudinal work with homeless or other marginalized populations are difficulty tracking participants, high rates of no-shows for follow-up interviews, and high rates of loss to follow-up. Recent research has shown that homeless populations have substantial access to information technologies, including mobile devices and computers. These technologies have the potential both to make longitudinal data collection with homeless populations easier and to minimize some of these methodological challenges. This pilot study's purpose was to test whether individuals who were homeless and sleeping on the streets-the Bstreet homeless^-would answer questions remotely through a web-based data collection system at regular Bfollowup^intervals. We attempted to simulate longitudinal data collection in a condensed time period. Participants (N = 21) completed an in-person baseline interview. Each participant was given a remotely reloadable gift card. Subsequently, weekly for 8 weeks, participants were sent an email with a link to a SurveyMonkey questionnaire. Participants were given 48 h to complete each questionnaire. Data were collected about life on the streets, service use, community inclusion, substance use, and high-risk sexual behaviors. Ten dollars was remotely loaded onto each participant's gift card when they completed the questionnaire within the completion window. A substantial number of participants (67% of the total sample and 86% of the adjusted sample) completed at least seven out of the eight follow-up questionnaires. Most questionnaires were completed at public libraries, but several were completed at other types of locations (social service agencies, places of employment, relative/friend/acquaintance's domiciles, or via mobile phone). Although some of the questions were quite sensitive, very few participants skipped any questions. The only variables associated with questionnaire completion were frequency of computer use and education-both positive associations. This pilot study suggests that collecting longitudinal data online may be feasible with a subpopulation of persons experiencing homelessness. We suspect that participant follow-up rates using web-based data collection methods have the potential to exceed follow-up rates using traditional in-person interviews. If this population of persons experiencing street homelessness can be successful with this method of data collection, perhaps other disenfranchised, difficult-to-track, or difficult-to-reach populations could be followed using web-based data collection methods. Local governments are striving to decrease the Bdigital divide,^providing free or greatly discounted wi-fi connectivity as well as mobile computer lab access to low-income geographic areas. These actions, in combination with increased smart phone ownership, may permit vulnerable populations to connect and communicate with investigators.

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Obtaining follow-up interviews for treatment evaluation

Cited by 89 publications

References 11 publications

Systematic review identifies number of strategies important for retaining study participants

Systematic review identifies number of strategies important for retaining study participants

Study retention as bias reduction in a hard-to-reach population

How Feasible is Multiple Time Point Web-Based Data Collection with Individuals Experiencing Street Homelessness?

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