title: Engaging Stakeholders to Inform Clinical Practice Guidelines That Address Multiple Chronic Conditions.
abstract: 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.
  
  
  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.
authors.affiliation: Division of General Internal Medicine, Department of Medicine, The Johns Hopkins University School of Medicine, Baltimore, MD, USA. wendy.bennett@jhmi.edu.|Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA. wendy.bennett@jhmi.edu.
authors.forename: Wendy L
authors.initials: WL
authors.lastname: Bennett
authors.affiliation: Kaiser Permanente National Guideline Program, Denver, CO, USA.|Kaiser Permanente, Institute for Health Research, Denver, CO, USA.
authors.forename: Craig W
authors.initials: CW
authors.lastname: Robbins
authors.affiliation: Kaiser Permanente, Institute for Health Research, Denver, CO, USA.|Department of Family Medicine, University of Colorado School of Medicine, Aurora, CO, USA.
authors.forename: Elizabeth A
authors.initials: EA
authors.lastname: Bayliss
authors.affiliation: Department of Health Policy and Management, The Johns Hopkins University School of Public Health, Baltimore, MD, USA.
authors.forename: Renee
authors.initials: R
authors.lastname: Wilson
authors.affiliation: Kaiser Permanente, Institute for Health Research, Denver, CO, USA.
authors.forename: Heather
authors.initials: H
authors.lastname: Tabano
authors.affiliation: Kaiser Permanente National Guideline Program, Denver, CO, USA.
authors.forename: Richard A
authors.initials: RA
authors.lastname: Mularski
authors.affiliation: Kaiser Permanente National Guideline Program, Denver, CO, USA.
authors.forename: Wiley V
authors.initials: WV
authors.lastname: Chan
authors.affiliation: Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland.
authors.forename: Milo
authors.initials: M
authors.lastname: Puhan
authors.affiliation: Department of Public Health, China Medical University Taichung, Taichung, Taiwan.
authors.forename: Tsung
authors.initials: T
authors.lastname: Yu
authors.affiliation: Division of Geriatric Medicine and Gerontology, Department of Medicine, The Johns Hopkins University School of Medicine, Baltimore, MD, USA.
authors.forename: Bruce
authors.initials: B
authors.lastname: Leff
authors.affiliation: Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.
authors.forename: Tianjing
authors.initials: T
authors.lastname: Li
authors.affiliation: Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.
authors.forename: Kay
authors.initials: K
authors.lastname: Dickersin
authors.affiliation: Department of Public Health, China Medical University Taichung, Taichung, Taiwan.
authors.forename: Carol
authors.initials: C
authors.lastname: Glover
authors.affiliation: Informing Patient-Centered Care for People with Multiple Chronic Conditions, Baltimore, MD, USA.|Gerontological Society of America, Washington, DC, USA.
authors.forename: Katie
authors.initials: K
authors.lastname: Maslow
authors.affiliation: Informing Patient-Centered Care for People with Multiple Chronic Conditions, Baltimore, MD, USA.
authors.forename: Karen
authors.initials: K
authors.lastname: Armacost
authors.affiliation: Informing Patient-Centered Care for People with Multiple Chronic Conditions, Baltimore, MD, USA.
authors.forename: Suzanne
authors.initials: S
authors.lastname: Mintz
authors.affiliation: Division of Geriatric Medicine and Gerontology, Department of Medicine, The Johns Hopkins University School of Medicine, Baltimore, MD, USA.
authors.forename: Cynthia M
authors.initials: CM
authors.lastname: Boyd
mesh_terms: D017028:Caregivers / Q000592:standards*; D003362:Cost-Benefit Analysis; D003695:Delivery of Health Care / Q000592:standards*; D003697:Delphi Technique; D017144:Focus Groups; D019983:Guideline Adherence / Q000592:standards*; D006801:Humans; D000071069:Multiple Chronic Conditions / Q000191:economics / Q000628:therapy*; D017063:Outcome Assessment, Health Care; D063868:Patient Outcome Assessment; D017410:Practice Guidelines as Topic; D014481:United States
keywords: multiple chronic conditions; qualitative research; stakeholder engagement