Engaging Stakeholders to Inform Clinical Practice Guidelines That Address Multiple Chronic Conditions
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Published on: January 12, 2018
Wendy L Bennett1,2, Craig W Robbins3,4, Elizabeth A Bayliss4,5
1Division of General Internal Medicine, Department of Medicine, The Johns Hopkins University School of Medicine, Baltimore, MD, USA. wendy.bennett@jhmi.edu.
Insights
This study identified key questions about blood pressure and diabetes management for patients with multiple chronic conditions (MCCs). Patient-centered outcomes were prioritized to improve clinical practice guidelines (CPGs) for better care.
Area of Science:
- Health Services Research
- Clinical Practice Guidelines
- Patient-Centered Outcomes
Background:
- Multiple chronic conditions (MCCs) are prevalent and increase healthcare utilization and treatment complexity.
- Clinical practice guidelines (CPGs) often do not address the unique needs and treatment trade-offs for individuals with MCCs.
Purpose of the Study:
- To identify high-priority clinical questions for MCCs and understand patient/caregiver-valued outcomes.
- To inform the development of CPGs that better balance treatment benefits and harms for individuals with MCCs.
Main Methods:
- A mixed-methods approach involving stakeholders, including patients and family caregivers.
- Modified Delphi method to refine clinical topics into research questions relevant to MCCs.
- Focus groups to gather patient and caregiver perspectives on meaningful outcomes and benefit/harm assessments.
Main Results:
- Identified "optimal blood pressure goals" and "diabetes medication management" as priority topics for CPGs.
- Determined key patient-important outcomes: physical function, emotional well-being, treatment burden, healthcare system interaction, and long-term health.
- Established a framework for engaging patients and caregivers in CPG development.
Conclusions:
- A mixed-methods process successfully identified priority clinical questions and patient-centered outcomes for MCCs.
- This study offers a generalizable process for CPG developers to incorporate patient and caregiver input.
- Engaging patients and stakeholders can enhance the relevance and applicability of CPGs for individuals with MCCs.
Background:
Having more than one chronic condition is common and is associated with greater health care utilization, higher medication burden and complexity of treatment. However, clinical practice guidelines (CPGs) do not routinely address the balance between harms and benefits of treatments for people with multiple chronic conditions (MCCs).
Objective:
To partner with the Kaiser Permanente Integrated Cardiovascular Health (ICVH) program to engage multiple stakeholders in a mixed-methods approach in order to: 1) identify two high-priority clinical questions related to MCCs, and 2) understand patients' and family caregivers' perceptions of meaningful outcomes to inform benefit/harm assessments for these two high-priority questions. These clinical questions and outcomes will be used to inform CPG recommendations for people with MCCs. DESIGN AND PARTICIPANTS: The ICVH program provided 130 topics rank-ordered by the potential for finding evidence that would change clinical recommendations regarding the topic. We used a modified Delphi method to identify and reword topics into questions relevant to people with MCCs. We used two sets of focus groups (n = 27) to elicit patient and caregiver perspectives on two important research questions and relevant patient-important outcomes on benefit/harm balance for people with MCCs.
Key Results:
Co-investigators, patients and caregivers identified "optimal blood pressure goals" and "diabetes medication management" as important clinical topics for CPGs related to people with MCCs. Stakeholders identified a list of relevant outcomes to be addressed in future CPG development including 1) physical function and energy, 2) emotional health and well-being, 3) avoidance of treatment burden, side effects and risks, 4) interaction with providers and health care system, and 5) prevention of adverse long-term health outcomes.
Conclusions:
Through the application of a mixed-methods process, we identified the questions regarding optimal blood pressure goals and diabetes medication management, along with related patient-centered outcomes, to inform novel evidence syntheses for those with MCCs. This study provides the lessons learned and a generalizable process for CPG developers to engage patient and caregivers in priority-setting for the translation of evidence into future CPGs. Ultimately, engaging patient and stakeholders around MCCs could improve the relevance of CPGs for the care of people with MCCs.
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