Paul H Gross1, Amy F Bailes2, Susan D Horn1, Edward A Hurvitz3, Jacob Kean1, Michele Shusterman4. 1. Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA. 2. Division of Occupational Physical Therapy, Cincinnati Children's Hospital and Medical Center, Cincinnati, OH, USA. 3. Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA. 4. CP NOW, Greenville, SC, USA.
Abstract
AIM: To establish a patient-centered research agenda for cerebral palsy (CP). METHOD: We engaged a large cross-section of the extended community of people living with CP and those providing healthcare to people with CP ('the community') in an educational series and collaborative survey platform to establish an initial list of prioritized research ideas. After online workshops, a facilitated Delphi process was used to select the 20 highest priorities. Select participants attended an in-person workshop to provide comment and work toward consensus of research priorities. RESULTS: A research agenda for CP was developed by the community, which included consumers, clinicians, and researchers interested in advancing the established research agenda. The results included the top 16 research concepts produced by the process to shape and steward the research agenda, and an engaged cross-section of the community. INTERPRETATION: It has been shown that proactively engaging consumers with clinical researchers may provide more meaningful research for the community. This study suggests that future research should have more focus on interventions and outcomes across the lifespan with increased emphasis on the following outcome measures: function, quality of life, and participation. WHAT THIS PAPER ADDS: A patient-centered research agenda for cerebral palsy was established. Comparative effectiveness of interventions, physical activity, and understanding ageing were leading themes. Longitudinal studies across the lifespan, clinical spectrum, and ages were highly ranked. Participants reported high value for participation outcomes. Participants reported great appreciation for the engagement between consumers and clinician researchers.
AIM: To establish a patient-centered research agenda for cerebral palsy (CP). METHOD: We engaged a large cross-section of the extended community of people living with CP and those providing healthcare to people with CP ('the community') in an educational series and collaborative survey platform to establish an initial list of prioritized research ideas. After online workshops, a facilitated Delphi process was used to select the 20 highest priorities. Select participants attended an in-person workshop to provide comment and work toward consensus of research priorities. RESULTS: A research agenda for CP was developed by the community, which included consumers, clinicians, and researchers interested in advancing the established research agenda. The results included the top 16 research concepts produced by the process to shape and steward the research agenda, and an engaged cross-section of the community. INTERPRETATION: It has been shown that proactively engaging consumers with clinical researchers may provide more meaningful research for the community. This study suggests that future research should have more focus on interventions and outcomes across the lifespan with increased emphasis on the following outcome measures: function, quality of life, and participation. WHAT THIS PAPER ADDS: A patient-centered research agenda for cerebral palsy was established. Comparative effectiveness of interventions, physical activity, and understanding ageing were leading themes. Longitudinal studies across the lifespan, clinical spectrum, and ages were highly ranked. Participants reported high value for participation outcomes. Participants reported great appreciation for the engagement between consumers and clinician researchers.
Authors: Bhooma R Aravamuthan; Darcy Fehlings; Sheetal Shetty; Michael Fahey; Laura Gilbert; Ann Tilton; Michael C Kruer Journal: Pediatrics Date: 2021-01-05 Impact factor: 7.124
Authors: Joanna Thomson; Matt Hall; Katherine Nelson; Juan Carlos Flores; Brigid Garrity; Danielle D DeCourcey; Rishi Agrawal; Denise M Goodman; James A Feinstein; Ryan J Coller; Eyal Cohen; Dennis Z Kuo; James W Antoon; Amy J Houtrow; Lucia Bastianelli; Jay G Berry Journal: Pediatrics Date: 2021-01-07 Impact factor: 7.124