Setting Patient-Centered Priorities for Cardiovascular Disease in Central Appalachia: Engaging Stakeholder Experts to Develop a Research Agenda
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Participants
2.2. Study Setting
2.3. Study Approach
2.4. Study Design
2.5. Data Collection and Analysis
3. Results and Outcomes
CVD Patient-Centered Research Priorities
4. Discussion
Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Abbreviations
References
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Round Number and Activity/Goal | Methodology/Process |
---|---|
Round 1. Stakeholder experts vote for top five priorities | Participants were asked to compile and rank their top five priorities for cardiovascular disease, based on their expertise or experience. Thematic analysis was used to analyze the collected data. The response rate was 14%. |
Round 2. Ranking of Priorities found within qualitative data | Using a 15-question instrument, experts were asked to select a specific number of their top research priorities based on the following categories: (1) Patient-centered care; (2) CVD risk factors; (3) Psychosocial determinants of CVD; (4) Social determinants of CVD. A total of 42/80 experts responded to Round II questionnaire (14 patients/non-licensed caregivers, 15 community stakeholders, and 13 professional/providers) The response rate was 52%. |
Further narrowing of priorities | Round II data analyzed. Data were analyzed using descriptive statistics in MS Excel and presented as percentages with illustrations in bar graph format |
Round 3. CVD Sharing Session at CVD Appalachia Conference II and Delphi Round III. Discussion and validation | Participants gathered at a conference to determine what priorities would move forward to make up the final research agenda. A paper-based survey was administered. Each closed-ended question asked for a priority ranking, with only one priority being selected from each question. Thirty-one out of forty stakeholders (7 patients, 18 providers, and 6 community stakeholders) submitted their responses. The response rate was 77.5%. |
Alignment of research agenda with PCORI initiatives | Fifteen priorities mapped to major areas. Six of the 15 priorities were patient-centered |
Characteristics | Round 1 n (%) | Round 2 n (%) | Round 3 n (%) |
---|---|---|---|
State | |||
Kentucky | 0 (0) | 3 (7) | 0 (0) |
North Carolina | 0 (0) | 2 (5) | 2 (6) |
Ohio | 1 (10) | 5 (12) | 3 (10) |
Tennessee | 6 (54) | 22 (52) | 15 (48) |
Virginia | 1 (10) | 7 (17) | 6 (19) |
West Virginia | 3 (27) | 3 (7) | 5 (17) |
Stakeholder Type | |||
Patient/Non-licensed caregiver | 7 (64) | 14 (33) | 7 (23) |
Provider/Professional | 2 (18) | 13 (31) | 18 (58) |
Community stakeholder | 2 (18) | 15 (36) | 6 (19) |
Demographic | |||
Sex | |||
Male | 2 (18) | 13 (31) | 14 (45) |
Female | 9 (82) | 29 (69) | 17 (72) |
Round Number and Goal | Outcomes |
---|---|
Round 1. Stakeholder experts vote for top five priorities | Fifty-five priorities were obtained from 11 experts. The priorities were then grouped into 7 major focus areas. The top five priorities generated: (1) nutrition education and best practices; (2) education for heart disease prevention; (3) increased opportunities for free and no-cost exercise and physical activities; (4) reducing cost of healthcare for heart disease; and (5) treatment of heart disease and stroke |
Round 2. Ranking of priorities found within qualitative data | A parsimonious set of priorities was selected by 42 experts from each category. Data ready for analysis to determine the research agenda twenty-four (24) items identified. |
Round 3. CVD Sharing Session at CVD Appalachia Conference II and Delphi Round III. Discussion and validation | Further input from 31 experts to determine final priorities. Refined list derived. Fifteen (15) items were identified; six of the 15 priorities were patient-centered as shown in Table 2 |
Alignment of research agenda with PCORI initiatives | Research agenda established by a consensus of Central Appalachia community stakeholders |
Priority Areas | Round 1 | Round 2 | Round 3 |
---|---|---|---|
(1) Patient-centered care | Education Lifestyle | More time with healthcare providers Better communication between providers and patients Shorter wait times for scheduling appointments Communicate and provide education to patients on their level | Communicate and provide education to patients on their level Shorter wait times for scheduling appointments Empower and motivate patients to take responsibility for their health and illnesses |
(2) CVD risk factors | Nutrition | Prevention of heart disease education Knowledge and education about the prevention of heart disease and risk factors Knowledge and skills in preparation of heart-healthy foods Knowledge and skills in reducing intake of sodium Knowledge and skills to prevent tobacco use Regular screenings for blood pressure, glucose and cardiac calcium | Knowledge and education about the prevention of heart disease and risk factors Prevention of heart disease education and skills on prevention of risk factors |
(3) Psychosocial determinants of health | Prevention | Knowledge and skills on how to reduce and manage stress Skills to prevent nicotine addiction | Knowledge and skills on how to reduce and manage stress Skills to prevent nicotine addiction |
(4) Social determinants of health | Physical Activity Nutrition | Access to affordable healthy food Access to care for heart disease Increase availability of no-cost walking options and exercise places in the community Lower costs for uninsured | Knowledge and education about physical activities for all ages |
(5) CVD policies and programs | Lifestyle Education Cost | Programs that target high-risk and low-socioeconomic populations to promote healthy lifestyles Affordable public transportation to access healthy lifestyle programs and sites | Programs that target high-risk and low-socioeconomic populations to promote healthy lifestyles School budgets to promote physical education, nutrition, and health education |
(6) Medication adherence | Cost Education | Better information and explanation of medications Affordable medications | Affordable medications |
(7) Managing CVD patient population | Education Lifestyle Prevention Screening | Healthcare providers to conduct community outreach and/or outreach practices Availability of mobile units to screen and treat heart disease Heart disease specialists in rural areas Empower/motivate patients to take responsibility for illness/health | Access to quality healthcare providers Heart disease specialists in rural areas More information on lifestyle changes versus relying solely on medications |
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Nyarambi, D.; Osedeme, F.; Mamudu, H.M.; Littleton, M.A.; Poole, A.M.; Blair, C.; Voigt, C.; Gregory, R.; Drozek, D.; Stewart, D.W.; et al. Setting Patient-Centered Priorities for Cardiovascular Disease in Central Appalachia: Engaging Stakeholder Experts to Develop a Research Agenda. Int. J. Environ. Res. Public Health 2023, 20, 5660. https://doi.org/10.3390/ijerph20095660
Nyarambi D, Osedeme F, Mamudu HM, Littleton MA, Poole AM, Blair C, Voigt C, Gregory R, Drozek D, Stewart DW, et al. Setting Patient-Centered Priorities for Cardiovascular Disease in Central Appalachia: Engaging Stakeholder Experts to Develop a Research Agenda. International Journal of Environmental Research and Public Health. 2023; 20(9):5660. https://doi.org/10.3390/ijerph20095660
Chicago/Turabian StyleNyarambi, Dumisa, Fenose Osedeme, Hadii M. Mamudu, Mary A. Littleton, Amy M. Poole, Cynthia Blair, Carl Voigt, Rob Gregory, David Drozek, David W. Stewart, and et al. 2023. "Setting Patient-Centered Priorities for Cardiovascular Disease in Central Appalachia: Engaging Stakeholder Experts to Develop a Research Agenda" International Journal of Environmental Research and Public Health 20, no. 9: 5660. https://doi.org/10.3390/ijerph20095660
APA StyleNyarambi, D., Osedeme, F., Mamudu, H. M., Littleton, M. A., Poole, A. M., Blair, C., Voigt, C., Gregory, R., Drozek, D., Stewart, D. W., Weierbach, F. M., Paul, T. K., Flores, E. K., & Wei, H. (2023). Setting Patient-Centered Priorities for Cardiovascular Disease in Central Appalachia: Engaging Stakeholder Experts to Develop a Research Agenda. International Journal of Environmental Research and Public Health, 20(9), 5660. https://doi.org/10.3390/ijerph20095660