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At a series of multidisciplinary meetings in 1994, Michael F. Parry, MD, FACP, now senior vice president for medical services and director of infections diseases at the Stamford (CT) Health System, along with physicians, community agencies, city health workers, and other interested parties, determined there was a piece missing from the health care puzzle for HIV patients.
"There was already a public health infrastructure that was dealing with prevention," says Parry. "There were school and community organizations that had a mandate for education. But no one was taking charge of delivery, particularly for underserved clients. Someone had to coordinate the delivery of care."
Subsequent data-collection efforts by the group determined that one-third of HIV-related admissions were preventable, that tested individuals were failing to seek medical follow-up, that there was a lack of knowledge in the provider and client community regarding available HIV resources, and that there were deficits in clinical knowledge at all levels.
Gathering data and using it would be key to the success of any new program. At the time, in 1994, the Ryan White grant program was just getting off the ground, and provided funding to hire a full-time nurse practitioner to shepherd such a program. The result is a system in the Stamford community that guarantees all HIV and AIDS patients receive a certain standard of care regardless of whether they are treated in a private practice or a public clinic.
The basis of providing the best care was having data available on every patient at any given time, and over time. Everything from patient compliance to missed appointment rates was to be stored in a single database. Information about whether patients were getting regular viral load tests, how well they responded to treatment, and when they should have another test was gathered.
The efforts resulted in the Connecticut Health-care Research and Education Foundation (CHREF) awarding the program, named the HIV Collaborative Disease Management as a Roadmap to Quality, with the John D. Thompson Award for Excellence in the Delivery of Healthcare through the Use of Data.
"There was nothing before," says Parry. "There were no organized standards of care, patient access to service was poor, and communication between agencies was poor."
Over the course of six years, the multidisciplinary task force has implemented five basic elements that have led to significant changes and improvements.
• Standardized care. Regardless of where a patient receives care, that patient will have the same care, with the same tests and procedures being done at the same points in the patient experience. "We created a standard set of practice guidelines based on what was already out there. We only adapted them to make them easy for us to use and apply. We didn’t depart from established, evidence-based standards."
This clinical guideline includes standardized intake sheets and a patient flowchart that patients can see at any time, which provides a data-over-time overview of the patient’s health status. (For a sample flowchart, see "Indicators Measured by HIV Program," below.)
• Dedicated leadership. Funded by the Ryan White grants, a nurse practitioner was hired to oversee the program. "[Julie Stewart] has been the foundation that drives this program and makes it work," says Parry. "She tracks patients, knows their latest data, makes sure they keep appointments, and even has her own small patient base."
Recently, the group hired another grant-funded position, a nurse adherence counselor, to meet with all new clients and talk about medication compliance. Parry says she makes home visits to educate them, and she provides patients with tools to help them remember to take the large number of medications most HIV and AIDS patients use. "She tries to break down their barriers and links them with support organizations. She works with them over the first few weeks of their care to make sure all is well."
In addition, she has started working with about 35 patients who have been adherence resistant. "So far, that hasn’t been very successful," Parry admits. "For a lot of reasons, there are some patients who won’t or don’t take their medicines and don’t show up for appointments. They come, they go, they have high viral loads and low CD4 counts. We don’t know how to solve that problem."
The adherence nurse visits patients, phones them, and uses all the tools in her power to improve compliance. "Certainly having a very dedicated nurse has helped, but we’ve only converted six or seven of those 35 patients. We are going to have to determine how much resource we want to devote to that cause when there are other causes that need attention."
• Ability to meet changing needs. The original multidisciplinary task force continues to meet and address issues as required. For instance, it has created several subcommittees, such as one to address perinatal transmission, and another to look at issues surrounding HIV and hepatitis C co-infections.
• Specialty clinic. Once a week, the group holds a special clinic where all new patients, all problem patients, and any patients who need reassessment are treated. At the clinic are social workers, the adherence counselor and nurse practitioners, pharmacy, drug-dependency counselors, physicians, and representatives from local support organizations. "That clinic provides patients all those people in one place."
• Single database. Having a single database as a repository of all the information on individual patients, as well as data on how the program as a whole is faring, has eliminated the need for physicians to chase down individual files from multiple venues. It has also solved the problem of various physicians, counselors, and other members of the health care team not knowing what each other is doing.
The results have been impressive. Along with improved patient satisfaction, there has been a reduction in emergency room visits, shorter lengths of stay for inpatients, and a significant decrease in perinatal transmission. "Between 1992 and 1996, perinatal transmission rates were around 40%," Parry says. "Now they are down to 5%." (For more information on some of the impact of the program, see charts below.)
Measures Relevant to Outpatient Management
|Clinic measure||1994-96||1997-98||1999-2000||p value*|
|Hepatitis C serology||52%||60%||82%||=0.005|
*p values determined using chi-square for two most recent time periods
|Source: Stamford (CT) Health System.|
|Measures Relevant to ED and Inpatient Management|
|Institutional measure||1997||1998||1999||p value|
|Perinatal transmission||45% (through 1996)||7.7% (1997-99)||0% (2000)||=0.041|
|Emergency department visits||181||139||44||<0.001|
|Average LOS (days)||11.4||10.5||7.3||<0.05|
|In-patient cost (average)||$11,443||n/a||$7,898||<0.05|
|Source: Stamford (CT) Health System.|
But despite that success, Parry doesn’t think he and his colleagues are done with their work. "We need better mental health resources for these clients," he notes. "Mental health resources have been cut a lot in Connecticut, and many of these patients need constant mental health care on a regular basis. We just don’t have the funding and resources for that."
The problem of adherence will have to be addressed, and the initial committee thinks that they may have a role to play in prevention after all. "In 1994, we thought that was a health department franchise. But new cases continue and we have to decide if we need to get involved in that, too."
The model of bringing together various community resources, and using a data-based model to determine shortcomings and improve care has worked ideally in this case. "This is a difficult population that are hard to get into care, but we have been able to succeed. We have made many strides through lots of hard work. We’ll never be 100% successful, but we have made dents in the problem."
[For more information, contact:
• Michael F. Parry, MD, FACP, senior vice president for medical services and director of infections diseases, Stamford Health System, 190 W. Broad St., Stamford, CT 06904. Telephone: (203) 325-7295.]
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