TY - JOUR
T1 - Enrolling African-American and Latino patients with asthma in comparative effectiveness research
T2 - Lessons learned from 8 patient-centered studies
AU - Kramer, C. Bradley
AU - LeRoy, Lisa
AU - Donahue, Sara
AU - Apter, Andrea J.
AU - Bryant-Stephens, Tyra
AU - Elder, John P.
AU - Hamilton, Winifred J.
AU - Krishnan, Jerry A.
AU - Shelef, Deborah Q.
AU - Stout, James W.
AU - Sumino, Kaharu
AU - Teach, Stephen J.
AU - Federman, Alex D.
N1 - Publisher Copyright:
© 2016 American Academy of Allergy, Asthma & Immunology
PY - 2016/12/1
Y1 - 2016/12/1
N2 - Background African-American and Latino patients are often difficult to recruit for asthma studies. This challenge is a barrier to improving asthma care and outcomes for these populations. Objectives We sought to examine the recruitment experiences of 8 asthma comparative effectiveness studies that specifically targeted African-American and Latino patients, and identify the solutions they developed to improve recruitment. Methods Case report methodology was used to gather and evaluate information on study design, recruitment procedures and outcomes from study protocols and annual reports, and in-depth interviews with each research team. Data were analyzed for themes, commonalities, and differences. Results There were 4 domains of recruitment challenges: individual participant, institutional, research team, and study intervention. Participants had competing demands for time and some did not believe they had asthma. Institutional challenges included organizational policies governing monetary incentives and staff hiring. Research team challenges included ongoing training needs of recruitment staff, and intervention designs often were unappealing to participants because of inconveniences. Teams identified a host of strategies to address these challenges, most importantly engagement of patients and other stakeholders in study design and troubleshooting, and flexibility in data collection and intervention application to meet the varied needs of patients. Conclusions Asthma researchers may have greater success with recruitment by addressing uncertainty among patients about asthma diagnosis, engaging stakeholders in all aspects of study design and implementation, and maximizing flexibility of study and intervention protocols. However, even with such efforts, engagement of African-American and Latino patients in asthma research may remain low. Greater investment in research on engaging these populations in asthma research may ultimately be needed to improve their asthma care and outcomes.
AB - Background African-American and Latino patients are often difficult to recruit for asthma studies. This challenge is a barrier to improving asthma care and outcomes for these populations. Objectives We sought to examine the recruitment experiences of 8 asthma comparative effectiveness studies that specifically targeted African-American and Latino patients, and identify the solutions they developed to improve recruitment. Methods Case report methodology was used to gather and evaluate information on study design, recruitment procedures and outcomes from study protocols and annual reports, and in-depth interviews with each research team. Data were analyzed for themes, commonalities, and differences. Results There were 4 domains of recruitment challenges: individual participant, institutional, research team, and study intervention. Participants had competing demands for time and some did not believe they had asthma. Institutional challenges included organizational policies governing monetary incentives and staff hiring. Research team challenges included ongoing training needs of recruitment staff, and intervention designs often were unappealing to participants because of inconveniences. Teams identified a host of strategies to address these challenges, most importantly engagement of patients and other stakeholders in study design and troubleshooting, and flexibility in data collection and intervention application to meet the varied needs of patients. Conclusions Asthma researchers may have greater success with recruitment by addressing uncertainty among patients about asthma diagnosis, engaging stakeholders in all aspects of study design and implementation, and maximizing flexibility of study and intervention protocols. However, even with such efforts, engagement of African-American and Latino patients in asthma research may remain low. Greater investment in research on engaging these populations in asthma research may ultimately be needed to improve their asthma care and outcomes.
KW - Comparative effectiveness research
KW - asthma
KW - patient-centered outcomes research
KW - study recruitment
KW - vulnerable populations
UR - http://www.scopus.com/inward/record.url?scp=85000925879&partnerID=8YFLogxK
U2 - 10.1016/j.jaci.2016.10.011
DO - 10.1016/j.jaci.2016.10.011
M3 - Article
C2 - 27789250
AN - SCOPUS:85000925879
SN - 0091-6749
VL - 138
SP - 1600
EP - 1607
JO - Journal of Allergy and Clinical Immunology
JF - Journal of Allergy and Clinical Immunology
IS - 6
ER -