IDEAS home Printed from https://ideas.repec.org/a/sae/medema/v39y2019i8p1019-1031.html
   My bibliography  Save this article

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
    as

    Download full text from publisher

    File URL: https://journals.sagepub.com/doi/10.1177/0272989X19883631
    Download Restriction: no
    File URL: https://libkey.io/10.1177/0272989X19883631?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    References listed on IDEAS

    as
    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.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Hyojung Tak & Gregory Ruhnke & Ya-Chen Shih, 2015. "The Association between Patient-Centered Attributes of Care and Patient Satisfaction," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 8(2), pages 187-197, April.
    2. Rathert, Cheryl & Mittler, Jessica N. & Vogus, Timothy J. & Lee, Yuna S.H., 2023. "Better outcomes through patient – Provider therapeutic connections? An exploratory study of proposed mediating variables," Social Science & Medicine, Elsevier, vol. 338(C).
    3. Mitchell, Ellen M.H. & Kwizera, Amata & Usta, Momade & Gebreselassie, Hailemichael, 2010. "Choosing early pregnancy termination methods in Urban Mozambique," Social Science & Medicine, Elsevier, vol. 71(1), pages 62-70, July.
    4. Nor Azmaniza Azizam & Siti Noorsuriani Maon & Leny Suzana & Nor Intan Shamimi Abdul Aziz, 2018. "Factors Influencing Selected Health Outcome among Patients Attending Universiti Teknologi MARA Medical Centre," International Journal of Academic Research in Business and Social Sciences, Human Resource Management Academic Research Society, International Journal of Academic Research in Business and Social Sciences, vol. 8(7), pages 500-511, July.
    5. Eissens van der Laan, M.R. & van Offenbeek, M.A.G. & Broekhuis, H. & Slaets, J.P.J., 2014. "A person-centred segmentation study in elderly care: Towards efficient demand-driven care," Social Science & Medicine, Elsevier, vol. 113(C), pages 68-76.
    6. Catherine Fullwood & Anne Kennedy & Anne Rogers & Martin Eden & Caroline Gardner & Joanne Protheroe & David Reeves, 2013. "Patients’ Experiences of Shared Decision Making in Primary Care Practices in the United Kingdom," Medical Decision Making, , vol. 33(1), pages 26-36, January.
    7. Kreuzer, Maria & Cado, Vesna & Raïes, Karine, 2020. "Moments of care: How interpersonal interactions contribute to luxury experiences of healthcare consumers," Journal of Business Research, Elsevier, vol. 116(C), pages 482-490.
    8. Janice Gandy & Erika Metzler Sawin & Sharon Zook & Lynne Eggert, 2019. "Improving Adherence to Mental Health Treatment in a Low-Income Clinic," SAGE Open, , vol. 9(2), pages 21582440198, May.
    9. Murdoch, Jamie & Salter, Charlotte & Ford, John & Lenaghan, Elizabeth & Shiner, Alice & Steel, Nicholas, 2020. "The “unknown territory” of goal-setting: Negotiating a novel interactional activity within primary care doctor-patient consultations for patients with multiple chronic conditions," Social Science & Medicine, Elsevier, vol. 256(C).
    10. Hardman, Doug & Ongaro, Giulio, 2020. "Subjunctive medicine: A manifesto," Social Science & Medicine, Elsevier, vol. 256(C).
    11. Gutin, Iliya, 2022. "Not ‘putting a name to it’: Managing uncertainty in the diagnosis of childhood obesity," Social Science & Medicine, Elsevier, vol. 294(C).
    12. Paulus, Trena M. & Grubbs, Heather & Rice-Moran, Renee & Lester, Jessica N., 2023. "How student healthcare providers in a communication skills course respond to standardized patient resistance," Social Science & Medicine, Elsevier, vol. 337(C).
    13. Lopes, Edilene & Carter, Drew & Street, Jackie, 2015. "Power relations and contrasting conceptions of evidence in patient-involvement processes used to inform health funding decisions in Australia," Social Science & Medicine, Elsevier, vol. 135(C), pages 84-91.
    14. Jennifer Chamberlain-Salaun & Kim Usher & Jane Mills, 2020. "Outsiders in the Experts’ World: A Grounded Theory Study of Consumers and the Social World of Health Care," SAGE Open, , vol. 10(1), pages 21582440209, January.
    15. Claudia Heilmann & Ulrike Stotz & Christina Burbaum & Johanna Feuchtinger & Rainer Leonhart & Matthias Siepe & Friedhelm Beyersdorf & Kurt Fritzsche, 2016. "Short‐term intervention to reduce anxiety before coronary artery bypass surgery – a randomised controlled trial," Journal of Clinical Nursing, John Wiley & Sons, vol. 25(3-4), pages 351-361, February.
    16. Hardman, Doug & Geraghty, Adam W.A. & Lown, Mark & Bishop, Felicity L., 2020. "Subjunctive medicine: Enacting efficacy in general practice," Social Science & Medicine, Elsevier, vol. 245(C).
    17. Debra Deasey & Ashley Kable & Sarah Jeong, 2016. "Results of a national survey of Australian nurses' practice caring for older people in an emergency department," Journal of Clinical Nursing, John Wiley & Sons, vol. 25(19-20), pages 3049-3057, October.
    18. Liberati, Elisa Giulia & Gorli, Mara & Moja, Lorenzo & Galuppo, Laura & Ripamonti, Silvio & Scaratti, Giuseppe, 2015. "Exploring the practice of patient centered care: The role of ethnography and reflexivity," Social Science & Medicine, Elsevier, vol. 133(C), pages 45-52.
    19. Lo, Ming-Cheng Miriam & Bahar, Roxana, 2013. "Resisting the colonization of the lifeworld? Immigrant patients' experiences with co-ethnic healthcare workers," Social Science & Medicine, Elsevier, vol. 87(C), pages 68-76.
    20. Koekkoek, B. & Hutschemaekers, G. & van Meijel, B. & Schene, A., 2011. "How do patients come to be seen as 'difficult'?: A mixed-methods study in community mental health care," Social Science & Medicine, Elsevier, vol. 72(4), pages 504-512, February.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:sae:medema:v:39:y:2019:i:8:p:1019-1031. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: SAGE Publications (email available below). General contact details of provider: .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.