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Using an Online, Modified Delphi Approach to Engage Patients and Caregivers in Determining the Patient-Centeredness of Duchenne Muscular Dystrophy Care Considerations

Author

Listed:
  • Dmitry Khodyakov

    (RAND Health Care, Santa Monica, CA, USA)

  • Sean Grant

    (RAND Health Care, Santa Monica, CA, USA
    Department of Social & Behavioral Sciences, Indiana University Richard M. Fairbanks School of Public Health, Indianapolis, IN, USA)

  • Brian Denger

    (Parent Project Muscular Dystrophy, Hackensack, NJ, USA)

  • Kathi Kinnett

    (Parent Project Muscular Dystrophy, Hackensack, NJ, USA)

  • Ann Martin

    (Parent Project Muscular Dystrophy, Hackensack, NJ, USA)

  • Marika Booth

    (RAND Health Care, Santa Monica, CA, USA)

  • Courtney Armstrong

    (RAND Health Care, Santa Monica, CA, USA)

  • Emily Dao

    (RAND, Santa Monica, CA, USA)

  • Christine Chen

    (RAND, Santa Monica, CA, USA)

  • Ian Coulter

    (RAND Health Care, Santa Monica, CA, USA)

  • Holly Peay

    (RTI International, Research Triangle Park, NC, USA)

  • Glen Hazlewood

    (Department of Medicine, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada)

  • Natalie Street

    (Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Atlanta, GA, USA)

Abstract

Purpose. To determine the patient-centeredness of endocrine and bone health Duchenne muscular dystrophy (DMD) care considerations using the RAND/PPMD Patient-Centeredness Method (RPM), which is a novel, online, modified-Delphi approach to engaging patients and caregivers in clinical guideline development. Methods. We solicited input on the patient-centeredness of care considerations from 28 individuals with DMD and 94 caregivers, randomly assigned to 1 of 2 mixed panels. During a 3-round online modified-Delphi process, participants rated the importance and acceptability of 19 DMD care considerations (round 1), reviewed and discussed the initial results (round 2), and revised their original ratings (round 3). Patient-centeredness was operationalized as importance and acceptability of recommendations. We considered a care consideration to be patient-centered if both panels deemed it important and acceptable. Results. Ninety-five panelists (78%) participated in this study. Of these, 88 (93%) participated in round 1, 74 (78%) in round 2, and 56 (59%) in round 3. Panelists deemed 12 care considerations to be patient-centered: 3 weight management, 3 bone health, 4 vertical growth, and 2 puberty recommendations. Seven care considerations did not meet patient-centeredness criteria. Common reasons were lack of evidence specific to DMD and concerns about insurance coverage, access to treatment, and patient safety. Conclusions. Using the RPM, Duchenne families considered most care considerations to be patient-centered. Besides being clinically appropriate, these considerations are likely to be consistent with the preferences, needs, and values of Duchenne families. While all relevant care considerations should be discussed during patient-provider encounters, those that did not meet patient-centeredness criteria in particular should be carefully considered as part of joint decision making between Duchenne families and their providers. Study Registration: HSRProj 20163126.

Suggested Citation

  • Dmitry Khodyakov & Sean Grant & Brian Denger & Kathi Kinnett & Ann Martin & Marika Booth & Courtney Armstrong & Emily Dao & Christine Chen & Ian Coulter & Holly Peay & Glen Hazlewood & Natalie Street, 2019. "Using an Online, Modified Delphi Approach to Engage Patients and Caregivers in Determining the Patient-Centeredness of Duchenne Muscular Dystrophy Care Considerations," Medical Decision Making, , vol. 39(8), pages 1019-1031, November.
    • Handle: RePEc:sae:medema:v:39:y:2019:i:8:p:1019-1031
    DOI: 10.1177/0272989X19883631
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    1. Mead, Nicola & Bower, Peter, 2000. "Patient-centredness: a conceptual framework and review of the empirical literature," Social Science & Medicine, Elsevier, vol. 51(7), pages 1087-1110, October.
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