Understanding and Honoring Patients with Multiple Chronic Conditions

Patients with multiple chronic health conditions have complicated daily care plans that involve many choices about care and treatment. These patients tend to be older, often receive conflicting medical advice, and experience worse quality of life, more adverse drug events, and higher mortality than those without multimorbidity. Clinical guidelines for individual chronic conditions often do not consider the needs of these patients, and trying to combine guidelines for individual conditions can lead to adverse outcomes in this population. Patients must also juggle self-management activities within the context and resources of other demands. Unlike acute health conditions, chronic conditions are primarily managed by patients and their families. Money, time, and the availability of a family caregiver all influence patients’ self-management choices, with greater impact to vulnerable populations.

This project determined the core design elements of a shared and interactive priority plan for patients living with multiple chronic health conditions. Researchers explored how patients with multimorbidity understand and set priorities for care. The results were used to inform the design of an interactive priority plan to be shared between patients and providers via the electronic health record system at Kaiser Permanente Washington.

The specific aims of the project were as follows:

• Establish patient needs, preferences, and capabilities for an interactive healthcare priority plan. 
• Engage patients, family caregivers, and providers in design to establish validated requirements for the interactive priority care plan. 

The study focused on patients who have diabetes and at least two of the following three common chronic conditions: osteoarthritis, coronary artery disease, and depression. Researchers conducted home visits with patients and family caregivers; they also shadowed and interviewed patients, caregivers, and providers in the clinic. Investigators then engaged patients and providers in a participatory design process to develop design principles and specifications for care planning, which honored patients’ needs, abilities, and preferences.

Analysis of home visits and interviews with patients and family members revealed six domains that patients ranked as most important for their well-being and health: personal values, social support, emotions, activities, abilities, and possessions. These principle values were interrelated and rarely expressed as individual values in isolation. Researchers found that current systems of care were not meeting the needs of patients with multiple chronic health conditions. In order to meet these needs, they developed recommendations for healthcare providers, researchers, and health information technology developers: 1) elicit a comprehensive set of a patient’s personal values at different points over time, 2) honor patient disclosures during patient-provider communications, 3) give healthcare providers tools and conversational probes to encourage patient disclosure of their personal values, and 4) create new health IT that highlights personal values to guide care planning. These finding were used to develop initial specifications for the tools, roles, and processes needed to support interactive priority planning.