Providers who have cared for AIDS and HIV positive patients for a decade or more have seen dramatic changes in both the care and the outcomes for patients. "Ten years ago we were helping patients die," recalls Robin Bidwell, BSN, RNC, CCRC, Performance Improvement Coordinator at Christiana Care Health Services in Wilmington, Delaware, USA. "Now we are telling these patients to go out and live their lives."

The shift from providing end-of-life care to chronic care for AIDS patients has required caregivers to refocus their efforts. "No longer do I need to know the phone number of the blood bank for an emergency transfusion," says Bidwell. "Now I need to know how to hook these patients into the workforce."

The HIV Program at Christiana Care is the largest provider of HIV/AIDS care in the state of Delaware, caring for an estimated 65 percent of HIV patients who are accessing care. With a staff of 45, including five board-certified infectious disease physicians, one board-certified internal medicine physician, nurses and nurse practitioners, pharmacists, psychologists and counselors, social workers and secretaries, the Program cares for more than 1,200 patients in five locations.

Bidwell says she and her colleagues worked with the Institute for Healthcare Improvement (IHI) to learn how to apply the Chronic Care Model developed by Ed Wagner, MD, to care for HIV/AIDS patients. Specifically, says Bidwell, staff at Christiana Care sought to improve care for the clinic's most disadvantaged population: women enrolled in the clinic's Title IV Intensive Care Management Program.

Chronic Care Model

Ryan White Title IV federal funding supports the provision of Intensive Care Management to HIV-infected women who are either pregnant, currently abusing drugs, have advanced HIV disease, or have mental illness. The grant funds a team of professionals who provide coordinated, family-centered and culturally sensitive case management to this multifaceted population. The coordinated system of care enhances the connection between patients' medical care and their psychosocial needs.

Efforts to improve care in this program have focused on enhancing patient self-management education and support; decision support; delivery system design; and clinical information systems. So far, the changes seem to be producing positive outcomes. Since introducing Intensive Care Management, the following improvements have been documented:

• Adherence to scheduled visits improved from 74 percent to 89 percent
• The percentage of patients on appropriate Highly Active Anti-Retroviral Therapy (HAART) increased from 72 percent to 88 percent
• The percentage of patients with an undetectable viral load (<400) increased from 33 percent to 37 percent
• The percentage of patients with a CD4 count greater than 200 remained stable at 71 percent (CD4 cells, or T-cells, are white blood cells that play an important role in the immune system).

Title IV clients are particularly well served by Intensive Care Management, says Bidwell. "About 40 percent of the women in the Title IV program are single heads of households with children," she says. "These women typically put the needs of their families first. They tend to miss appointments and forego medication. When they have a dual diagnosis of mental illness, they are particularly challenged."

"The Title IV team consists of a social worker, a social work technician, an educator, a coordinating nurse and care provider, and a nurse practitioner," says Joni Miller, BSN, ACRN, Title IV Project Coordinator at Christiana Care. Miller says, "We also coordinate with the patient's primary care provider. Each patient has a care plan that is updated every four months. The patient helps set her own goals, and reviews it regularly with the social worker."

Comprehensive Care and Education

Title IV teams, which meet weekly, collaborate with external agencies in an effort to coordinate services. These services typically include mental health referrals as well as referrals for substance abuse counseling and treatment. Team members make phone calls to check on medication adherence or remind patients about appointments. "Barriers to care are assessed and strategies to address them are added to the care plans," says Miller. Staff also make home visits to patients who have missed more than two appointments, both to assess the patient's health and discuss methods to improve compliance.

Other changes the providers introduced include family-centered education and outreach. "For pregnant women, the social worker is responsible for the baby as well, making sure it gets into the care of a pediatrician," says Miller. "Within the family unit, if there is an adolescent at risk, or a spouse, we recommend testing and follow up."

The team provides comprehensive education to both patients and their families on HIV issues and on life skills. "Many of the women bring someone with them to learn about HIV and AIDS, a mother, a spouse, a boyfriend," says Miller. The team also offers classes in parenting and financial management. "We also hold patient support groups, and we provide childcare, so the groups are generally well attended."

A Culture of Innovation

In addition, Miller says the Title IV team works with local hospitals to educate staff about appropriate care for HIV/AIDS patients. "As providers we assume that when one of our clients goes into labor she will get the AZT she needs, and the baby will too," she says. (AZT is one of the few anti-HIV drugs that cross the blood-brain barrier.)  "But we've found that doesn't always happen. So we are really concentrating on educating the hospitals that our clients use." Christiana Care Title IV team nurses go to the hospitals to present lectures and hold discussions with the labor and delivery staff and the physicians who deliver babies, says Miller.

"It is hard work," concedes Bidwell, "and we have a very dedicated staff with very little turnover. It has taken us a couple of years to get where we are today. But we are lucky to be working in an organization where we are able to try new things, test ideas, and pursue the ones that work. Here, everyone's opinion is valued."

The culture of innovation and improvement that Bidwell describes led Christiana Care to join IHI's IMPACT network last year, an alliance of change-oriented health care organizations committed to working together to achieve dramatic improvement on a broad scale. Launched in May 2002, IMPACT currently consists of 96 organizations, including hospitals, health systems, and academic medical centers.

The value of the hard work done by the Title IV staff can be found in the data that show better care and better outcomes. But for the staff, the real rewards are more personal. "We have one client in her early 30s who enrolled about 18 months ago with a dual diagnosis of HIV and depression," says Miller. "She was living alone, had no high school diploma, no job, and was very depressed. But she got into the program, stuck to her care plan, got her General Educational Development (GED), is working, and is now getting ready to enter college. She is the perfect example of how the program can work. Because of the efforts of the Title IV team, she underwent a life change, and came to see how successful she could be."