Using stakeholder engagement to develop a patient-centered pediatric asthma intervention - 18/04/17
, Cynthia Rand, PhD b, Randi Streisand, PhD a, Ivor B. Horn, MD, MPH c, Kabir Yadav, MDCM, MS, MSHS d, Lisa Stewart, MA e, Naja Fousheé, MS a, Damian Waters, PhD a, Stephen J. Teach, MD, MPH fAbstract |
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.
Le texte complet de cet article est disponible en PDF.Key words : Asthma, stress, intervention, patient engagement, stakeholder engagement, protocol development
Abbreviations used : NAC, SEC
Plan
| Research reported in this article was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (AS-1307-05284). The funder played an important role in the community engagement process reported herein but played no role in the preparation of this manuscript. One of the authors (L.S.) was an independent paid consultant to the research team during the engagement process but is now employed by the PCORI in Washington, DC. The views, statements and opinions in this article, report are solely the responsibility of the authors and do not necessarily represent the views of the PCORI, its Board of Governors or Methodology Committee. |
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| Disclosure of potential conflict of interest: D. Q. Shelef has received funding from the Patient-Centered Outcomes Research Institute, the National Institutes of Health, and local Department of Health and has received travel support from the Patient-Centered Outcomes Research Institute. C. Rand and R. Streisand have received funding from the Patient-Centered Outcomes Research Institute. I. B. Horn has received funding from the Patient-Centered Outcomes Research Institute, is on the Medical Advisory Board for Accolade, has consultant arrangements with Howard University, has received travel support from Academy Health, and is on the Advisory Board for the Robert Wood Johnson Foundation. K. Yadav has received funding from the Patient-Centered Outcomes Research Institute and the National Center for Advancing Translational Sciences. L. Stewart has received a consulting fee or honorarium from Children's National Health System and is employed by the Patient-Centered Outcomes Research Institute. N. Fousheé has received funding and travel support from the Patient-Centered Outcomes Research Institute. D. Waters has received consulting fees from Children's National Health System. S. J. Teach has received funding and travel support from the Patient-Centered Outcomes Research Institute; has consultant arrangements with Novartis; is employed by the Children's National Health System; has received grants from the National Institutes of Health/National Institute of Allergy and Infectious Diseases and the National Institutes of Health/National Heart, Lung, and Blood Institute; has received royalties from UpToDate; and has received payment for development of educational presentations from Genentech. |
Vol 138 - N° 6
P. 1512-1517 - décembre 2016 Retour au numéro
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- Patient-centered outcomes research to improve asthma outcomes
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