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

Dmitry Khodyakov, Sean Grant, Brian Denger, Kathi Kinnett, Ann Martin, Marika Booth, Courtney Armstrong, Emily Dao, Christine Chen, Ian Coulter, Holly Peay, Glen Hazlewood and Natalie Street
Additional contact information
Dmitry Khodyakov: RAND Health Care, Santa Monica, CA, USA
Sean Grant: RAND Health Care, Santa Monica, CA, 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

Medical Decision Making, 2019, vol. 39, issue 8, 1019-1031

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.

Keywords: clinical practice guidelines; Duchenne muscular dystrophy (DMD) care considerations; Duchenne muscular dystrophy; online modified delphi; patient engagement; RAND/PPMD Patient-Centeredness Method (RPM), recombinant human growth hormone (rhGH) (search for similar items in EconPapers)
Date: 2019
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Persistent link: https://EconPapers.repec.org/RePEc:sae:medema:v:39:y:2019:i:8:p:1019-1031

DOI: 10.1177/0272989X19883631

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