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

Deborah Q. Shelef, Cynthia Rand, Randi Streisand, Ivor B. Horn, Kabir Yadav, Lisa Stewart, Naja Fousheé, Damian Waters, Stephen J. Teach

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
Pages (from-to)1512-1517
Number of pages6
JournalJournal of Allergy and Clinical Immunology
Volume138
Issue number6
DOIs
StatePublished - Dec 1 2016

Keywords

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

ASJC Scopus subject areas

  • Immunology and Allergy
  • Immunology

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  • Cite this

    Shelef, D. Q., Rand, C., Streisand, R., Horn, I. B., Yadav, K., Stewart, L., Fousheé, N., Waters, D., & Teach, S. J. (2016). Using stakeholder engagement to develop a patient-centered pediatric asthma intervention. Journal of Allergy and Clinical Immunology, 138(6), 1512-1517. https://doi.org/10.1016/j.jaci.2016.10.001