Using Stakeholder Engagement to Develop a Patient-Centered Pediatric Asthma Intervention

Abstract Background Stakeholder engagement has the potential to develop research interventions which are responsive to patient and provider preferences. This approach contrasts with traditional models of clinical research, in which researchers determine the study’s design. Objective This article des...

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Bibliographic Details
Published in:	Journal of allergy and clinical immunology 2016-12, Vol.138 (6), p.1512-1517
Main Authors:	Shelef, Deborah Q., MPH, Rand, Cynthia, PhD, Streisand, Randi, PhD, Horn, Ivor B., MD, MPH, Yadav, Kabir, MDCM, MS, MSHS, Stewart, Lisa, MA, Foushee, Naja, MS, Waters, Damian, PhD, Teach, Stephen J., MD, MPH
Format:	Article
Language:	eng
Subjects:	Activities of daily living African Americans Allergy and Immunology Asthma Asthma - epidemiology Behavior modification Children & youth Community Networks Community-Based Participatory Research Focus groups Healthcare Disparities Humans Intervention Low income groups Meetings Parents & parenting patient engagement Patient-Centered Care Patients Peer tutoring Planning protocol development Qualitative research Randomized Controlled Trials as Topic Researchers Social support stakeholder engagement stress United States
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Summary:	Abstract Background Stakeholder engagement has the potential to develop research interventions which are responsive to patient and provider preferences. This approach contrasts with traditional models of clinical research, in which researchers determine the study’s design. Objective This article describes the impact of stakeholder engagement on the design of a randomized trial of an intervention designed to improve child asthma outcomes by reducing parental stress. Methods The study team developed and implemented a stakeholder engagement process that provided iterative feedback regarding the study design, patient-centered outcomes, and intervention. Stakeholder engagement incorporated the perspectives of parents of children with asthma, local providers of community-based medical, legal and social services, and national experts in asthma research methodology and implementation. Results Through a year-long process of multi-dimensional stakeholder engagement, the research team successfully refined and implemented a patient-centered study protocol. Key stakeholder contributions included selection of patient-centered outcome measures, refinement of intervention content and format, and language framing the study in a culturally-appropriate manner. Conclusions Stakeholder engagement was a useful framework for developing an intervention that was acceptable and relevant to our target population. This approach may have unique benefits in underserved populations, leading to sustainable improvement in health outcomes and reduced disparities.
ISSN:	0091-6749 1097-6825