Retaining participants in community-based health research: a case example on standardized planning and reporting

Autor: Andrea Gonzalez, Rosemary Lever, Lenora Marcellus, Susan M. Jack, Nicole L. A. Catherine, Charlotte Waddell, Debbie Sheehan, Harriet L. MacMillan, Corinne Tallon
Jazyk: angličtina
Rok vydání: 2020
Předmět:
medicine.medical_specialty
Adolescent
MEDLINE
Medicine (miscellaneous)
030204 cardiovascular system & hematology
Nurses
Community Health
Adolescents
Vulnerable Populations
law.invention
Interviews as Topic
03 medical and health sciences
Underserved Population
Young Adult
0302 clinical medicine
Randomized controlled trial
law
Pregnancy
Attrition
Medicine
Humans
Pharmacology (medical)
Generalizability theory
030212 general & internal medicine
Randomized Controlled Trials as Topic
Community based
Protocol (science)
Socioeconomic disadvantage
lcsh:R5-920
British Columbia
Parenting
business.industry
Research
Patient Selection
Postpartum Period
Models
Theoretical
medicine.disease
House Calls
Retention
Social Class
Research Design
Family medicine
Child
Preschool
Female
business
lcsh:Medicine (General)
Follow-Up Studies
Zdroj: Trials
Trials, Vol 21, Iss 1, Pp 1-12 (2020)
ISSN: 1745-6215
Popis: Background Effective strategies for participant retention are critical in health research to ensure validity, generalizability and efficient use of resources. Yet standardized guidelines for planning and reporting on retention efforts have been lacking. As with randomized controlled trial (RCT) and systematic review (SR) protocols, retention protocols are an opportunity to improve transparency and rigor. An RCT being conducted in British Columbia (BC), Canada provides a case example for developing a priori retention frameworks for use in protocol planning and reporting. Methods The BC Healthy Connections Project RCT is examining the effectiveness of a nurse home-visiting program in improving child and maternal outcomes compared with existing services. Participants (N = 739) were girls and young women preparing to parent for the first time and experiencing socioeconomic disadvantage. Quantitative data were collected upon trial entry during pregnancy and during five follow-up interviews until participants’ children reached age 2 years. A framework was developed to guide retention of this study population throughout the RCT. We reviewed relevant literature and mapped essential retention activities across the study planning, recruitment and maintenance phases. Interview completion rates were tracked. Results Results from 3302 follow-up interviews (in-person/telephone) conducted over 4 years indicate high completion rates: 90% (n = 667) at 34 weeks gestation; and 91% (n = 676), 85% (n = 626), 80% (n = 594) and 83% (n = 613) at 2, 10, 18 and 24 months postpartum, respectively. Almost all participants (99%, n = 732) provided ongoing consent to access administrative health data. These results provide preliminary data on the success of the framework. Conclusions Our retention results are encouraging given that participants were experiencing considerable socioeconomic disadvantage. Standardized retention planning and reporting may therefore be feasible for health research in general, using the framework we have developed. Use of standardized retention protocols should be encouraged in research to promote consistency across diverse studies, as now happens with RCT and SR protocols. Beyond this, successful retention approaches may help inform health policy-makers and practitioners who also need to better reach, engage and retain underserved populations. Trial registration ClinicalTrials.gov, NCT01672060. Registered on 24 August 2012.
Databáze: OpenAIRE
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