Recommended Topics for PCORI Research on Multiple Chronic Conditions

For health care reforms, whether being implemented or contemplated, identifying and pursuing ways to improve the health of the millions of Americans coping with multiple chronic conditions (MCC) are worthy, much-needed areas of focus. Given that it was created to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions, the Patient-Centered Outcomes Research Institute (PCORI) presents an important opportunity to fund research critically needed by patients facing multiple chronic conditions and their providers to enhance care for the large and growing number of people affected. To assist, the Partnership to Fight Chronic Disease has developed a list of important research topics representing areas of high need and high value for people coping with multiple chronic conditions for PCORIs consideration. We also strongly encourage collaborative efforts between PCORI and research at NIH, CDC, and other agencies within HHS to accelerate progress for people with multiple chronic conditions. In the identification of these areas of research to enhance outcomes for people with multiple chronic conditions (MCC), we recognize the significant heterogeneity that will be encountered with this population. There is heterogeneity in the demographics and health status of the individuals affected, the settings in which care is or may be delivered, treatment effects, and in the combinations of comorbidities themselves and the level of severity involved, among other areas. The existence of these differences is a primary cause of limitations with the applicability of the existing evidence base and should be an important consideration in the design and selection of research projects across the comparative effectiveness research spectrum from developing effective models of care to interpreting and applying data and informing decision makers. We also recognize the significant need to build the evidence base and enhance care in practical ways taking real world experiences and limitations into account. The recommended topic areas are organized by overarching objectives to enhance patientcentered outcomes an empowered patient population engaging with a well-informed and equipped healthcare delivery system.

Empowered Patient Population

Informed Evidence Base

Equipped Health System

Empowered: Informing and enabling decision-making and self-care Developing, testing, and evaluating: Tools for communicating prognosis, treatment options, complexity, burden, and impact on quality of life (short and long term), incorporating outcomes beyond longevity. Tools should include ways to improve health literacy for people in crisis, including ways to stage information to maximize its impact and effectiveness and to communicate uncertainty given limitations in the tools and evidence available. Tools to assess patient and family caregiver capacity and additional supports needed to optimize treatment accounting for the willingness to communicate Methods for incorporating patient preferences in choosing treatment options (including, evaluating benefits and risks, treatment intensity, uncertainty, prognosis, etc.) and family preferences including reconciling preferences where different from patient, developing communication tools, and the like Tools to facilitate shared decision-making among providers and the individual patient, including identifying models that work to address health disparities and health literacy issues through culturally relevant means Means to facilitate coordination and collaboration among providers, incorporating patient preferences and treatment goals into shared treatment plans Methods to understand and adapt communication and decision-making to account for differences - e.g., cultural, gender, generational, geographical, racial, and ethnic - in benefit/risk evaluation, prognosis, and patient preferences Caregiving models and tools to determine and incorporate caregiving capacity and caregiver preferences into decision-making for people with multiple chronic conditions. Informed: Interpreting and applying the evidence Developing, testing and evaluating: Tools to utilize existing clinical practice guidelines and other available information most effectively in ways that allow for clinicians to individualize treatment based on patient needs and preferences. Tools should include information on limitations of existing prognosis models that have not been validated or tested with people having multiple chronic conditions. Methods to bring patients into the guideline development process in terms of identifying the questions patients would want guidelines to answer to facilitate decision-making. Methods for investigating the common challenges confronted by patients with multiple chronic conditions and utilizing that information to better inform treatment guidelines. Methods for efficient comparative effectiveness research that explicitly addresses patients with multiple chronic conditions. Tools for patients and providers to evaluate feasibility, both clinical and individual, to recommended treatment regimens. Individual feasibility should include ways to assess cognitive, emotional, behavioral, and mental health barriers to care, and level of caregiving support and capacity. Methods to assess patient preferences with respect to weighing benefits and risks, desired health outcomes and priorities, reassessing those determinants over time. Tools to determine prioritization of treatment outcomes, incorporating patient preferences, clinical and personal feasibility.

Objective methods to evaluate outcomes for patients with complex needs and evaluating the impact of pay-for-performance delivery models on patients with multiple chronic conditions. Tools to overcome health disparities in the recommendation and pursuit of treatment options for people with multiple chronic conditions. Methods to identify and evaluate programs and tools that consider subpopulations not only categorized by disease, but also by other characteristics that help to identify best practices in addressing health disparities and match intervention strategies with patient populations.

Equipped: Effective Models of Care Developing, testing, and evaluating: Patient-centered definition(s) of effective care in context of individual patients with multiple chronic conditions. Models that enhance self-management, adherence, and caregiving for people with multiple chronic conditions Effective care models that enhance prevention for people with multiple chronic conditions or at risk for developing more than one chronic condition, including identification and ways to address common risk factors for MCCs. Ways to train existing and future healthcare workforces, including community and lay health workers, to prevent and manage multiple chronic conditions effectively. Care models that promote coordination/collaboration for patients with multiple chronic conditions and flexibility in care settings, modalities, and use of resources within and outside clinical settings. Processes for to promote patient-centered treatment plans among multiple providers and facilitate implementation within different care settings. Outcomes related to care settings for patients with multiple chronic conditions, including the use of combinations of care settings over time to develop care models that promote independence and better health.