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More than 4 million people in the United States are infected with hepatitis C, which makes it roughly four times more prevalent than HIV. Despite that fact, the disease is not on the radar screen of many case managers, says Nancy Skinner, RN, CCM, a consultant with Riverside Healthcare Consulting in Whitwell, TN.
"Hepatitis C is not viewed by patients, physicians, and case managers as an emerging epidemic," asserts Skinner, a past president of the Little Rock, AR-based Case Management Society of America (CSMA). "We think about the things we deal with every day," she explains.
Hepatitis C is the most common cause of liver cancer in the United States and worldwide. It is the leading cause of cirrhosis and cirrhosis-related mortality, says David Nelson, MD, associate professor of medicine at the University of Florida College of Medicine in Gainesville. It accounts for 40% of all liver disease in the United States, he adds. Moreover, hepatitis C is already the most common cause of liver transplantation in the country. Typically, a liver transplant costs between $150,000 and $500,000, Nelson reports.
Fortunately, the number of new infections has dropped fairly dramatically, from a peak of roughly 150,000 a year to 30,000. "It is not so much that we are seeing a rising number of new infections," says Nelson. "What we are seeing now are millions of people who have had this disease for decades who are now presenting for medical care." Unlike hepatitis A and B, this disease develops chronic infection in the majority of those who are exposed to the virus, he adds.
One challenge confronting case managers is the difficulty of validating the cost savings, Skinner says. "How do you say, I saved $500,000 because I got this patient treated early’?" What are needed are better outcomes measures to validate the efficacy of case management services. Several case management components are required when working with patients with hepatitis C, she says. That includes understanding how these elements interface with this patient population:
• Assessment. According to Skinner, assessment is the cornerstone of case management. "Case managers are the best detectives in the world. Assessment is what we do best." In this role, case managers often find information that other health care providers miss because case managers take the time to ask patients their greatest concerns and what is preventing them from being compliant, she says.
While it is well understood that the entire patient population must be assessed, the health care system is doing a poor job of trying to determine who is at risk for hepatitis C, even as it reaches epidemic proportions, Skinner says. The risk factors include blood transfusions prior to 1992, which may include women who had either a vaginal delivery or a cesarean prior to that time. Organ transplant patients and IV drug users also are at risk.
Beyond that, there are the assessments of patients who already have been diagnosed with this disease. When patients are diagnosed, she says, case managers should begin asking a series of questions, beginning with: What were the risk factors? When did the transmission occur? What is the primary diagnosis? Is there another diagnosis that is negatively impacting the diagnosis of hepatitis C?
In addition, she says, case managers must determine what symptoms the patient has reported. Unfortunately, by the time patients are identified based on symptoms, they are suffering from terrible fatigue or liver damage, she adds.
Next, case managers must assess the patient’s understanding of the disease process, Skinner says. Most patients never seek a second opinion. That makes it critical for case managers to make patients aware of their options, she argues.
Case managers also must determine the extent of liver disease. According to Skinner, there is a scoring index and activity index that case managers can use. She says the four main questions case managers should look at are:
Case managers also must assess the treatment plan, says Skinner. Who is the primary care physician? Is there a gastroenterologist or hepatologist as part of the treatment team? In addition, what are the current treatment goals? Case managers sometimes forget to ask the treating physician about the treatment goals and to monitor those goals, she says. "That is going to help us to identify our outcomes for case management."
Also, what is the anticipated outcome of prescribed therapy? According to Skinner, once the anticipated treatment options that are expected are available, case managers should be able to question the hepatologist about the goal once that therapy begins as well as how it will be monitored.
• Treatment. According to Skinner, case managers must determine the patient’s greatest concern regarding their disease and treatment plan. What is the current treatment, including prescribed medications? Has the patient been treated before? Was the treatment successful? Are there any nationally accepted guidelines?
She says case managers also must learn the answer to these questions: Is the patient compliant? If not, why not? Is the patient aware of available treatment options? Is he or she part of a clinical trial? If so, what phase of the trial has been completed, and who is the principal investigator?
• Planning. Skinner says that planning should be carried out in coordination with the patient and family, the attending physician, and the interdisciplinary treatment team to establish primary treatment goals and a means for achieving those goals.
She says patients must be aware of the side effects and be informed about all aspects of the continuing care plan. Among the key considerations is whether the patient is using any alternative medication. She says patients must be aware that they need to share with their physician what alternative medications they are taking to make sure there is not any conflict between the alternative medications and the prescribed medications.
Case managers also must determine if there are any lifestyle issues. "This is where we need to share information with our patients so they won’t transmit the virus," says Skinner. That can happen simply by sharing a razor or a toothbrush, she notes.
Skinner says case managers also must determine whether the patient maintains regular appointments with the attending physician. She notes that some at-risk behavior, such as IV drug use, is very high in patient populations that may not understand the importance of compliance. That becomes the role of case managers, she says.
Other key considerations include:
• Facilitation. According to Skinner, the role of case managers is to facilitate the implementation of an appropriate continuing care plan. She says case managers should begin with these questions: Are the patients active participants in the plan? Have they identified any barriers to achieving their desired health care outcomes?
Another key consideration for case managers is knowing how you will be informed regarding any changes in the patient’s continuing care plan. "Sometimes [physicians] forget about us," warns Skinner. "We are not at the top of the physician’s list all the time."
• Advocacy. Finally, Skinner says case managers must learn to act as patient advocates." Case managers are the heart of the health care system," she argues. That is because case managers are tasked with balancing fiscal responsibility with patient advocacy, she says.