Patient education is a large piece of disease management puzzle
Yet integrated plan required to ensure program's success
Patient buy-in is one of the most important components of any disease management program. "Unless the patient buys into the management process and accepts their part of the responsibility, it won't work," says Robert A. Browne, MD, FACP, senior health outcomes research consultant at Eli Lilly in Indianapolis.
Therefore, the education must do more than provide information. It has to get the patient involved enough to be willing to change his or her behavior. Many programs are finding that the best way to accomplish this goal is to tailor the education to the specific needs of the patient and family. The Childhood Asthma Initiative, designed for children in the New York City homeless shelter system and launched in April 1998, begins the education process with the information most crucial to the family at that moment.
"It is an innovative approach to management in that it doesn't start with a prescribed sequence of classes. We have a set of sessions, but we start where families are. We do this whether the sessions are with individuals or conducted in a group. Then we move through all the topics as the families need those topics," says Diane McLean, PhD, MPH, director of the Childhood Asthma Initiative. The Initiative is a joint partnership of the Children's Health Fund, Montefiore Medical Center, and Scheiring-Plough Corp., all in New York City.
That means one family might begin with counseling on how to fit asthma into their lives, while another family might start with education on asthma symptoms.
The needs of the patient also drive the disease management program being piloted at the Center for Wellness and Prevention at The Ohio State University Medical Center in Columbus. Before education begins, patients are given a confidential personal health information assessment. Using this information, a health advisor, similar to a case manager, works with a patient to set specific goals and determine a plan of education, says Sandra Cornett, RN, PhD, program manager for consumer health education at the Medical Center.
Depending on their needs, patients can be enrolled in a seven-week course on disease management; attend core group classes that focus on nutrition, behavior, and exercise; and receive disease-specific counseling as a group or as individuals.
While much of the curriculum already existed, the services were not integrated within the center. In the past, a case manager educated patients on an individual basis. While patients in the new program will receive individual counseling, they will often be taught in groups, making the system more efficient. Also, more of the teaching will be done by experts such as the exercise physiologist or dietitian.
Education only one component
Although patient education is an important element in any disease management program, other components always complement it. A disease management program must be designed to give patients resources, tools, and access to health care and services so they can manage the disease. It also must coordinate care across the sites of care delivery, says Browne. (For information on steps to take to design a disease management program, see related story, p. 123.)
The Childhood Asthma Initiative is a multilevel, multidisciplinary approach to asthma management that integrates four types of services, says McLean. In addition to education it has a clinical component, a psychosocial services component, and an environmental component.
The clinical component provides assessment, diagnosis, and treatment based on specific guidelines. Full primary care services are provided to the children in the shelters by a mobile medical unit. Computerized medical records are used to keep track of the child, even when he or she moves to a different shelter. When the child leaves the shelter system, he or she is given a pediatric referral to Montefiore Medical Center. Families can receive medical advice from a health care professional 24 hours a day by calling an 800 number.
The psychosocial service component includes referrals for counseling and social services, as well as stress reduction and management. This component is integrated with education because families cannot learn about asthma when other issues take precedence, says McLean.
The environmental component involves smoking cessation and harm reduction strategies as well as dust mite, roach, and rodent control.
Although the program's effectiveness is currently being studied, McLean says good disease management cannot be accomplished with just one component. It must be approached in a multidisciplinary way.
Guidelines, pathways decrease diversity
The disease management program at the University of Texas MD Anderson Cancer Center in Houston was designed to organize and oversee the treatment of patients throughout the course of their illness. The components include clinical practice guidelines, a care pathway that has a large patient education section, and a patient pathway. Each component is designed for a particular cancer.
When a patient is enrolled on a pathway, a computer generates the entire package, which includes the pathway, the patient education materials, outcomes material the multidisciplinary staff chart on, and preprinted physician orders that the physician can modify if necessary.
All these components increase quality by decreasing diversity in practice, says Loretta Murphy, RN, BSN, MBA, OCN, associate administrator, practice outcomes program at MD Anderson. However, there must be a way to measure the effectiveness of each program to make sure quality of care is improving, she says.
A database is kept on pathway data to compare patients on length of stay, clinical outcomes, and cost. Action plans are created when improvements are deemed necessary.
MD Anderson patients currently are placed on a care path within the disease practice guideline in the ambulatory setting, and it follows them into the inpatient setting. The next phase will be to extend the continuum and determine how the plan of care, pathway, and protocol integrate with the agency receiving the patient at the next stage of care, such as a subacute agency or hospice, says Murphy.
A good disease management program involves integration of care across the spectrum from prevention to taking care of the very sick, says Brown. It also involves all parts of the health system. While many institutions are working toward this goal, few have achieved it, he says.
One reason is that it is difficult to coordinate care across sites. "We have delivered care in boxes. We have a physician office box, a hospital box, an emergency department box, and we haven't coordinated them very well," says Brown.
Physicians and other disciplines must buy into the program, says Murphy. At MD Anderson, physicians are not required to enroll patients in the disease management program. Yet as data on program effectiveness are collected, more and more physicians are coming on board. In August 1996, the cancer center was enrolling 80 patients a month on pathways. By August 1998, the number had increased to 500 patients each month.
Another barrier is reimbursement, especially for education. The program at The Ohio State Medical Center is designed to last 12 months, but not all insurance companies will cover the cost. For example, many companies will cover a 12-week diabetes program, but not one that lasts a year. "It's difficult to do behavior change in such a short period of time," says Cornett.
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