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 - Funding Information:
Research reported in this article was funded through Patient-Centered Outcomes Research Institute (PCORI) awards (2000-50-30-20 AD0004 to Abt; AS-1307-05218 to A.J.A.; AS-1308-05876 to J.E.; AS-1307-05584 to A.D.F.; AS-1308-05887 to W.H.; AS-1307-05498 to J.W.S.; AS 1307-05420 to J.A.K.; AS-1307-05588 to K.S.; and AS-1307-05284 to S.T.). The views, statements, and opinions in this article are solely the responsibility of the authors and do not necessarily represent the views of PCORI, its Board of Governors, or the Methodology Committee.
Funding Information:
Disclosure of potential conflict of interest: C. B. Kramer, J. A. Krishnan, D. Q. Shelef, and K. Sumino receive grant support from the Patient Centered Outcomes Research Institute (PCORI). W. J. Hamilton receives grant support from the National Institutes of Health (NIH) and PCORI. S. J. Teach receives grant support from the NIH/NHLBI/MICHD/NIAID, EJF Philanthropies, Fight for Children and Novartis; serves on the advisory board for Novartis; receives royalties from UpToDate and the American College of Emergency Physicians. The rest of the authors declare that they have no relevant conflicts of interest. Asthma and lower airway disease
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 -