IDEAS home Printed from https://ideas.repec.org/a/gam/jijerp/v20y2023i9p5660-d1134022.html
   My bibliography  Save this article

Setting Patient-Centered Priorities for Cardiovascular Disease in Central Appalachia: Engaging Stakeholder Experts to Develop a Research Agenda

Author

Listed:
  • Dumisa Nyarambi

    (Department of Community and Behavioral Health, College of Public Health, East Tennessee State University, Johnson City, TN 37614, USA)

  • Fenose Osedeme

    (Department of Community and Behavioral Health, College of Public Health, East Tennessee State University, Johnson City, TN 37614, USA)

  • Hadii M. Mamudu

    (Department of Health Services Management and Policy, College of Public Health, East Tennessee State University, Johnson City, TN 37614, USA
    Center for Cardiovascular Risk Research, East Tennessee State University, Johnson City, TN 37614, USA)

  • Mary A. Littleton

    (Department of Community and Behavioral Health, College of Public Health, East Tennessee State University, Johnson City, TN 37614, USA)

  • Amy M. Poole

    (Center for Cardiovascular Risk Research, East Tennessee State University, Johnson City, TN 37614, USA)

  • Cynthia Blair

    (Center for Cardiovascular Risk Research, East Tennessee State University, Johnson City, TN 37614, USA)

  • Carl Voigt

    (Center for Cardiovascular Risk Research, East Tennessee State University, Johnson City, TN 37614, USA)

  • Rob Gregory

    (Karing Hearts Cardiology, Johnson City, TN 37604, USA)

  • David Drozek

    (Heritage College of Osteopathic Medicine, Ohio University, Athens, OH 45701, USA)

  • David W. Stewart

    (Center for Cardiovascular Risk Research, East Tennessee State University, Johnson City, TN 37614, USA
    Department of Pharmacy Practice, Bill Gatton College of Pharmacy, East Tennessee State University, Johnson City, TN 37614, USA)

  • Florence M. Weierbach

    (Center for Cardiovascular Risk Research, East Tennessee State University, Johnson City, TN 37614, USA
    College of Nursing, East Tennessee State University, Johnson City, TN 37614, USA)

  • Timir K. Paul

    (Center for Cardiovascular Risk Research, East Tennessee State University, Johnson City, TN 37614, USA
    College of Medicine, Health Science Center, University of Tennessee-Nashville, Nashville, TN 37203, USA)

  • Emily K. Flores

    (Center for Cardiovascular Risk Research, East Tennessee State University, Johnson City, TN 37614, USA
    Department of Pharmacy Practice, Bill Gatton College of Pharmacy, East Tennessee State University, Johnson City, TN 37614, USA)

  • Holly Wei

    (College of Nursing, East Tennessee State University, Johnson City, TN 37614, USA)

Abstract

The disproportionate burden of cardiovascular diseases (CVD) and associated risk factors continues to exist in the Central Appalachian Region (CAR) of the United States. Previous studies to gather data about patient-centered care for CVD in the region were conducted through focus group discussions. There have not been any studies that used a collaborative framework where patients, providers, and community stakeholders were engaged as panelists. The objective of this study was to identify patient-centered research priorities for CVD in the CAR. We used a modified Delphi approach to administer questionnaires to forty-two stakeholder experts in six states representing the CAR between the fall of 2018 and the summer of 2019. Their responses were analyzed for rankings and derived priorities by research gaps. Six of the fifteen research priorities identified were patient-centered. These patient-centered priorities included shorter wait times for appointments; educating patients at their level; empowering patients to take responsibility for their health; access to quality providers; heart disease specialists for rural areas; and lifestyle changes. The participants’ commitments to identify patient-centered research priorities indicate the potential to engage in community-based collaboration to address the burden of CVD in the CAR.

Suggested Citation

  • Dumisa Nyarambi & Fenose Osedeme & Hadii M. Mamudu & Mary A. Littleton & Amy M. Poole & Cynthia Blair & Carl Voigt & Rob Gregory & David Drozek & David W. Stewart & Florence M. Weierbach & Timir K. Pa, 2023. "Setting Patient-Centered Priorities for Cardiovascular Disease in Central Appalachia: Engaging Stakeholder Experts to Develop a Research Agenda," IJERPH, MDPI, vol. 20(9), pages 1-10, April.
  • Handle: RePEc:gam:jijerp:v:20:y:2023:i:9:p:5660-:d:1134022
    as

    Download full text from publisher

    File URL: https://www.mdpi.com/1660-4601/20/9/5660/pdf
    Download Restriction: no

    File URL: https://www.mdpi.com/1660-4601/20/9/5660/
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    1. Braden O’Neill & Vanessa Aversa & Katherine Rouleau & Kim Lazare & Frank Sullivan & Nav Persaud, 2018. "Identifying top 10 primary care research priorities from international stakeholders using a modified Delphi method," PLOS ONE, Public Library of Science, vol. 13(10), pages 1-10, October.
    2. Carina A. C. M. Pittens & Janneke E. Elberse & Merel Visse & Tineke A. Abma & Jacqueline E. W. Broerse, 2014. "Research agendas involving patients: Factors that facilitate or impede translation of patients’ perspectives in programming and implementation," Science and Public Policy, Oxford University Press, vol. 41(6), pages 809-820.
    3. Wallerstein, N. & Duran, B., 2010. "Community-based participatory research contributions to intervention research: The intersection of science and practice to improve health equity," American Journal of Public Health, American Public Health Association, vol. 100(S1), pages 40-46.
    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. Lotte Prevo & Stef Kremers & Maria Jansen, 2020. "Small Successes Make Big Wins: A Retrospective Case Study towards Community Engagement of Low-SES Families," IJERPH, MDPI, vol. 17(2), pages 1-13, January.
    2. Held, Suzanne & Hallett, John & Schure, Mark & Knows His Gun McCormick, Alma & Allen, Sarah & Milne-Price, Shauna & Trottier, Coleen & Bull Shows, Brianna & Other Medicine, Lucille & Inouye, Jillian, 2019. "Improving chronic illness self-management with the Apsáalooke Nation: Development of the Báa nnilah program," Social Science & Medicine, Elsevier, vol. 242(C).
    3. Mayer, Yael & Ilan, Rotem & Slone, Michelle & Lurie, Ido, 2020. "Relations between traumatic life events and mental health of Eritrean asylum-seeking mothers and their children's mental health," Children and Youth Services Review, Elsevier, vol. 116(C).
    4. Katrina G. Claw & Casey R. Dorr & Erica L. Woodahl, 2024. "Implementing community-engaged pharmacogenomics in Indigenous communities," Nature Communications, Nature, vol. 15(1), pages 1-5, December.
    5. Dana H. Z. Williamson & Sheryl Good & Daphne Wilson & Na’Taki Osborne Jelks & Dayna A. Johnson & Kelli A. Komro & Michelle C. Kegler, 2023. "Using the Collaborative Problem-Solving Model: Findings from an Evaluation of U.S. EPA’s Environmental Justice Academy," Sustainability, MDPI, vol. 15(20), pages 1-24, October.
    6. Meena Daivadanam & Maia Ingram & Kristi Sidney Annerstedt & Gary Parker & Kirsty Bobrow & Lisa Dolovich & Gillian Gould & Michaela Riddell & Rajesh Vedanthan & Jacqui Webster & Pilvikki Absetz & Helle, 2019. "The role of context in implementation research for non-communicable diseases: Answering the ‘how-to’ dilemma," PLOS ONE, Public Library of Science, vol. 14(4), pages 1-22, April.
    7. Ullrich-French, Sarah & Cole, Amy N. & Montgomery, Anna K., 2016. "Evaluation development for a physical activity positive youth development program for girls," Evaluation and Program Planning, Elsevier, vol. 55(C), pages 67-76.
    8. Ebitu, Larmbert & Avery, Helen & Mourad, Khaldoon A. & Enyetu, Joshua, 2021. "Citizen science for sustainable agriculture – A systematic literature review," Land Use Policy, Elsevier, vol. 103(C).
    9. Jessica L. Mackelprang & Janessa M. Graves & Halle M. Schulz, 2024. "Using Photovoice to Explore Determinants of Health among Homeless and Unstably Housed Women," IJERPH, MDPI, vol. 21(2), pages 1-13, February.
    10. Heather Lochotzki & Karen Patricia Williams & Cynthia G. Colen & Olorunfemi Adetona & Charleta B. Tavares & Georgina M. Ginn & Rejeana Haynes & Wansoo Im & Tanya Bils & Darryl B. Hood, 2022. "A Framework for Interfacing and Partnering with Environmental Justice Communities as a Prelude to Human Health and Hazard Identification in the Vulnerable Census Tracts of Columbus, Ohio," IJERPH, MDPI, vol. 19(21), pages 1-18, October.
    11. Tabia Henry Akintobi & Payam Sheikhattari & Emma Shaffer & Christina L. Evans & Kathryn L. Braun & Angela U. Sy & Bibiana Mancera & Adriana Campa & Stephania T. Miller & Daniel Sarpong & Rhonda Hollid, 2021. "Community Engagement Practices at Research Centers in U.S. Minority Institutions: Priority Populations and Innovative Approaches to Advancing Health Disparities Research," IJERPH, MDPI, vol. 18(12), pages 1-14, June.
    12. Kraemer Diaz, Anne E. & Spears Johnson, Chaya R. & Arcury, Thomas A., 2013. "Variation in the interpretation of scientific integrity in community-based participatory health research," Social Science & Medicine, Elsevier, vol. 97(C), pages 134-142.
    13. Nimo Bokore & Susan Lee McGrath & Patricia McGuire & Abdirizak Karod & Mitra Rahimpour & Ajani Asokumar, 2023. "Developing a Trauma-Informed Culturally-Based Intervention (TICBI) Approach for Refugee Resettlement Practices," International Journal of Social Work, Macrothink Institute, vol. 10(1), pages 1-29, June.
    14. Scholz, Roland W. & Czichos, Reiner & Parycek, Peter & Lampoltshammer, Thomas J., 2020. "Organizational vulnerability of digital threats: A first validation of an assessment method," European Journal of Operational Research, Elsevier, vol. 282(2), pages 627-643.
    15. Teresa, Riccardi Maria & Valentina, Pettinicchio & Marcello, Di Pumpo & Gerardo, Altamura & Cesare, Nurchis Mario & Roberta, Markovic & Čedomir, Šagrić & Miodrag, Stojanović & Luca, Rosi & Gianfranco,, 2023. "Community-based participatory research to engage disadvantaged communities: Levels of engagement reached and how to increase it. A systematic review," Health Policy, Elsevier, vol. 137(C).
    16. Shin, Hyunsook & Lee, Suk Jeong & Lee, Yu-nah & Shon, Soonyoung, 2019. "Community health needs assessment for a child health promotion program in Kyrgyzstan," Evaluation and Program Planning, Elsevier, vol. 74(C), pages 1-9.
    17. Shelley Gower & Zakia Jeemi & David Forbes & Paul Kebble & Jaya A. R. Dantas, 2022. "Peer Mentoring Programs for Culturally and Linguistically Diverse Refugee and Migrant Women: An Integrative Review," IJERPH, MDPI, vol. 19(19), pages 1-18, October.
    18. Kristine Wray & Akarath Soukhaphon & Brenda Parlee & Amabel D’Souza & Carolina Freitas & Iria Heredia & Chelsea Martin & Carrie Oloriz & Tracey Proverbs & Neal Spicer, 2020. "Aligning Intentions with Community: Graduate Students Reflect on Collaborative Methodologies with Indigenous Research Partners," Sustainability, MDPI, vol. 12(18), pages 1-19, September.
    19. Nancy A Scott & Taryn Vian & Jeanette L Kaiser & Thandiwe Ngoma & Kaluba Mataka & Elizabeth G Henry & Godfrey Biemba & Mary Nambao & Davidson H Hamer, 2018. "Listening to the community: Using formative research to strengthen maternity waiting homes in Zambia," PLOS ONE, Public Library of Science, vol. 13(3), pages 1-16, March.
    20. Tiffany Zellner Lawrence & Tabia Henry Akintobi & Assia Miller & Elaine Archie-Booker & Tarita Johnson & Donoria Evans, 2016. "Assessment of a Culturally-Tailored Sexual Health Education Program for African American Youth," IJERPH, MDPI, vol. 14(1), pages 1-13, December.

    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:gam:jijerp:v:20:y:2023:i:9:p:5660-:d:1134022. 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: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .

    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.