Retention strategies and predictors of attrition in an urban pediatric asthma study

Statistical and Clinical Coordinating Center - Rho Federal Systems Division, Inc., Chapel Hill, NC, USA.
Clinical Trials (Impact Factor: 1.93). 08/2010; 7(4):400-10. DOI: 10.1177/1740774510373798
Source: PubMed

ABSTRACT The Urban Environment and Childhood Asthma (URECA) study is a multicenter prospective birth cohort study designed to examine factors related to the development of childhood asthma and allergies in an inner-city population. The retention of these participants has been challenging due to high mobility, inconsistent phone service, custody issues, and stressful life situations.
In this article, we describe the specific retention challenges we encountered during the first 2 years of follow-up in URECA and the strategies we utilized to address them. We also examine how selected maternal characteristics and other factors are related to retention and missed study visits.
Strategies implemented to engage participants included: collecting updated and alternative contact information, after-hours phone calls to participants, culturally competent staff, flexible study event scheduling, clinic visit transportation, quarterly newsletters, retention events, drop-in home visits, and cell phone reimbursements. An internally developed web-based data management system enabled close monitoring by site teams and the coordinating center. The rate of deactivations was calculated using survival analysis. Characteristics of active and deactivated participants were compared using the chi-squared test with a Cochran-Mantel - Haenszel adjustment for study site. The proportion of missed visits of the total expected in the first 2 years was calculated and compared by family characteristics using an ANOVA model or a trend test controlling for study site. All analyses were performed using SAS version 9.1 (Cary, NC).
The 2-year retention rate was 89%. Participation in the first study event predicted subsequent engagement in study activities. Mothers who did not complete the first visit were more likely to miss future events (46.1% vs. 8.9%, p<0.0001) and to be deactivated (38.5% vs. 4.5%, p<0.0001). Mothers under 18 years of age were more likely to leave the study compared to older mothers (22.7% vs. 10.1%, p = 0.02). Also, mothers who were married missed fewer events than those not married (8.8% vs. 15.6%, p = 0.01). In addition, deactivations were more common when the child had entered daycare by 3 months of age (10.9% vs. 3.6%, p = 0.05).
The URECA population is predominantly minority, thus our findings might not be generalizable to other populations. Furthermore, we may not be able to observe the effects that might exist in a more diverse population. For example, 86% of the mothers are unmarried, making it difficult to reliably examine the effect of marital status.
In research, successfully engaging and retaining participants is essential for achieving the study objectives. Identifying factors related to missed visits and deactivations are the initial step in recognizing the potential at-risk participants and can enable the design of targeted strategies to retain participants.

Download full-text


Available from: Carolina Jordan, Mar 04, 2015
14 Reads
  • Source
    • "However, as described earlier, we have incentives in place and the research assistants will receive training guided by recent articles that have examined the factors that make young people more or less likely to remain in a longitudinal study. These include quality of initial visit [92] which incorporates ‘explaining the purpose of the study so that young people are enthused and feel they are making a contribution’, maintaining regular contact between visits [93,94], and giving financial incentives [95]. Initial baseline data will be available for all participants so comparisons can be made between those who continue in the study and those who drop out. "
    [Show abstract] [Hide abstract]
    ABSTRACT: Young people with complex health needs have impairments that can limit their ability to carry out day-to-day activities. As well as coping with other developmental transitions, these young people must negotiate the transfer of their clinical care from child to adult services. The process of transition may not be smooth and both health and social outcomes may suffer.Increasingly, policy-makers have recognised the need to ensure a smoother transition between children's and adult services, with processes that are holistic, individualised, and person-centred; however, there is little outcome data to support proposed models of care. This study aims to identify the features of transitional care that are potentially effective and efficient for young people with complex health needs making their transition.Methods/designLongitudinal cohort study. 450 young people aged 14 years to 18 years 11 months (with autism spectrum disorder and an additional mental health problem, cerebral palsy or diabetes) will be followed through their transition from child to adult services and will contribute data at baseline, 12, 24 and 36 months. We will collect data on: health and wellbeing outcomes (participation, quality of life, satisfaction with services, generic health status (EQ-5D-Y) and condition specific measure of disease control or management); exposure to proposed beneficial features of services (such as having a key worker, appropriate involvement of parents); socio-economic characteristics of the sample; use of condition-related health and personal social services; preferences for the characteristics of transitional care.We will us regression techniques to explore how outcomes vary by exposure to service features and by characteristics of the young people. These data will populate a decision-analytic model comparing the costs and benefits of potential alternative ways of organising transition services.In order to better understand mechanisms and aid interpretation, we will undertake qualitative work with 15 young people, including interviews, non-participant observation and diary collection. This study will evaluate the effect of service components of transitional care, rather than evaluation of specific models that may be unsustainable or not generalisable. It has been developed in response to numerous national and international calls for such evaluation.
    BMC Public Health 07/2013; 13(1):675. DOI:10.1186/1471-2458-13-675 · 2.26 Impact Factor
  • Source
    • "Our results also suggest that the inclusion of an interpreter in medical care can have a positive impact on attitudes toward medical research. A multicultural and culturally-competent research team can help improve the participation of minorities, specifically those who speak other languages [44] [45]. "
    [Show abstract] [Hide abstract]
    ABSTRACT: Although it is federally-mandated that racial/ethnic minorities be included in research studies, recruiting diverse populations remains a challenge. This is particularly difficult when research involves children. The purpose of this study was to assess attitudes and beliefs toward medical research among a racially and socioeconomically diverse population of parents of school children. A cross-sectional parent-report survey was conducted in New York City public elementary schools using stratified random selection to obtain a diverse population. Fear of medical research and likelihood to participate in medical research were assessed using a validated questionnaire. Differences in fear/likelihood to participate in research across race/ethnicity and socioeconomic characteristics were evaluated. In general, parents were afraid of their child "being treated as a guinea pig", but were willing to allow their child to participate in research if asked by their own doctor. Factors associated with a lower score on fear toward research were; primary language other than English (OR=0.59), access to an interpreter (OR=0.73) and access to medical service within a day (OR=0.51). Latinos had the highest fear score (OR=1.87) compared to Whites. Asians were the ethnic group most likely to participate in research (OR=1.71). Low education level (OR=2.18) and public health insurance (OR=1.37) were associated with a higher score for likelihood of allowing one's child to participate in medical research. Minority parents reported more fear of allowing their children to participate in medical research, but were as likely to consent their children's participation, especially if asked by their own physician.
    Contemporary clinical trials 08/2012; 33(6):1197-205. DOI:10.1016/j.cct.2012.07.014 · 1.94 Impact Factor
  • Source
    • "Longitudinal follow-up of high-risk populations presents many challenges to researchers (Zook et al., 2010). Maintaining long-term active participation of study participants is a critical element of successful long-term studies (Aitken, Gallagher, & Madronio, 2003; Marcellus, 2004). "
    [Show abstract] [Hide abstract]
    ABSTRACT: The purpose of the current study was to identify and describe strategies available to optimize retention of a high-risk research cohort and assist in the recovery of study participants following participant dropout. The Maternal Lifestyle Study (MLS), which investigated the effects of prenatal substance exposure (cocaine or opiates) on child outcome, is a prospective longitudinal follow-up study that extended from birth through 15 years of age. Retention strategies to maximize participation and factors that might negatively impact compliance were examined over the course of five follow-up phases. At the conclusion of the 15-year visits, MLS had successfully maintained compliance at 76%. Retention rates did not differ by exposure group. Maintaining ongoing participation of enrolled study subjects is a critical element of any successful longitudinal study. Strategies that can be used to reengage and maintain participants in longitudinal research include persistence, flexibility with scheduling, home visits, long-distance trips, increased incentives, and development of a computerized tracking system. Establishing rapport with families and ensuring confidentiality contributed to overall participant retention. The use of multiple tracking techniques is essential. Researchers are challenged to maintain participants in longitudinal studies to ensure the integrity of their research.
    Journal of Nursing Scholarship 03/2012; 44(2):120-6. DOI:10.1111/j.1547-5069.2012.01439.x · 1.64 Impact Factor
Show more