Beyond 50.09 Chronic Care: A Call to Action for Health Reform

Patients and caregivers speak out! Watch the video: Faces of Chronic Care.

This ninth volume of Beyond 50 paints a portrait of chronic illness from the consumer perspective. Focus groups and surveys conducted for the study provide a unique look at how patients and caregivers experience the health care system and the challenges of coordinating care.

Full Report (PDF, 4 MB)
Executive Summary (PDF, 460 KB)
Chapter 1. Chronic Conditions Among Older Americans (PDF, 1.8 MB)
Chapter 2. The Many Faces of Chronic Disease (PDF, 780 KB)
Chapter 3. Patients and Caregivers Report Proglems with Care (PDF, 660 KB)
Chapter 4. Chronic Care Delivery Needs to Change (PDF, 730 KB)
Chapter 5. Conclusions and Policy Recommendations (PDF, 270 KB)

The report shows that tremendous changes in medical science, combined with shifts in lifestyle and demographics, have resulted in a rapid rise in the number and proportion of individuals living with one or more chronic illnesses, with older Americans being especially vulnerable to chronic disease. The experience of chronic disease varies widely. At one end of the spectrum are people with mild chronic diseases who are in other respects healthy and do not have functional limitations; at the other end are people with multiple chronic conditions and severe functional limitations, who are more likely to be among the oldest-old. The group with functional limitations often uses the health care system more intensively and is more at risk for poor coordination of care.

AARP conducted two national surveys with independent samples: one with people with chronic health conditions who had experienced at least one transition from a health care institution during the previous three years (August 22-27, 2008) and one with unpaid family caregivers of people with chronic conditions (October 3-15, 2008). Survey findings suggest opportunities for improvement in care coordination, especially during transitions, by better identifying and supporting less-activated patients. They also suggest that fostering better patient engagement could be part of a strategy to improve chronic care.

The report concludes that addressing barriers in the health care system requires a multi-pronged strategy that relies on better knowledge, tools, and incentives. Key recommendations include:

• More testing of care delivery models to find out what works and rapid adoption of better models
• Incorporating best practices in clinical preparation and training for providers
• Engaging patients with chronic conditions who are able and will to participate in their care
• Supporting family caregivers and engaging caregivers as partners with professionals
• Encouraging wise use of pharmaceuticals
• Improving coordination of care through adoption of health information technology
• Improving incentives through changes to payment policy that would reward all providers for working together
• Ensuring an adequate workforce and making the most of the workforce we have
• Working for medication affordability

(110 pages)