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J Allergy Clin Immunol. 2016 Dec;138(6):1512-1517. doi: 10.1016/j.jaci.2016.10.001. Epub 2016 Oct 12.

Using stakeholder engagement to develop a patient-centered pediatric asthma intervention.

Author information

1
Center for Translational Science, Children's National Health System, Washington, DC. Electronic address: dquint@childrensnational.org.
2
Division of Pulmonary and Critical Care Medicine, Department of Medicine, Johns Hopkins Medical Center, Baltimore, Md.
3
Center for Translational Science, Children's National Health System, Washington, DC.
4
Department of Pediatrics, University of Washington School of Medicine, Seattle Children's Hospital, Seattle, Wash.
5
Department of Emergency Medicine, Harbor-UCLA Medical Center, Torrance, Calif.
6
Engagement Division, Patient-Centered Outcomes Research Institute, Washington, DC.
7
Department of Pediatrics, Children's National Health System, Washington, DC.

Abstract

Stakeholder engagement has the potential to develop research interventions that are responsive to patient and provider preferences. This approach contrasts with traditional models of clinical research in which researchers determine the study's design. This article describes the effect of stakeholder engagement on the design of a randomized trial of an intervention designed to improve child asthma outcomes by reducing parental stress. 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. Through a year-long process of multidimensional 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. Stakeholder engagement was a useful framework for developing an intervention that was acceptable and relevant to our target population. This approach might have unique benefits in underserved populations, leading to sustainable improvement in health outcomes and reduced disparities.

KEYWORDS:

Asthma; intervention; patient engagement; protocol development; stakeholder engagement; stress

PMID:
27744029
DOI:
10.1016/j.jaci.2016.10.001
[Indexed for MEDLINE]

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