Following CF patients throughout continuum
Following CF patients throughout continuum
Multidisciplinary team provides treatment, support
A case management program that follows adults with cystic fibrosis (CF) through the continuum of care has paid off for Dartmouth-Hitchcock Medical Center in Lebanon, NH.
The CF program at the academic medical center is ranked in the top 10% in quality measures among Cystic Fibrosis Foundation-accredited centers.
Priscilla Robichaud, RN, CCM, continuing care manager-pulmonary, manages the care of 75 cystic fibrosis patients, seeing them in the clinic with the pulmonologist, coordinating their treatment while they are in the hospital, visiting them in the home whenever possible, and keeping in constant touch by telephone and e-mail.
"I’ve been working with these patients for nine years, and I’ve become part of their family. At the medical center, I’ve become the person who knows everything about those patients, and I’m the filter for all of the issues the patient has," Robichaud says.
Robichaud was part of a group of advanced care managers hired to coordinate the care of patients in the medical center’s outpatient clinics. She was hired originally to manage the care of CF patients in the clinics, but as her expertise increased and her rapport with the patients grew, her role expanded to the hospital bedside.
Initially, a different case manager worked with the CF patients when they were admitted to the hospital, but the patient would just tell that case manager: "Ask Priscilla. She knows everything about me."
"I have become the advocate for these patients," Robichaud says. "The most rewarding part is seeing them in the community continuum. I do home visits as often as possible, see them in the clinic, and manage their care when they’re inpatients."
When she started the assignment, Robichaud began seeing patients in the clinic treatment room with the provider so she could learn more about the disease and its effect on the patients, a practice she continues today.
"These patients are so consumed with the physical, emotional, and financial toll the disease takes that it’s hard to separate the issues. When a doctor starts patients on a new medication and they aren’t sure their insurance company will pay for it, I’m there to help them," she says.
People with CF often have issues with insurance, medication, emotional problems, and compliance with their treatment plan. "These patients are very well educated about their disease but are not always as adherent to their treatment plan as we would like," Robichaud says. "I try to educate them on how adhering to their treatment regime will help them avoid problems down the road."
Robichaud manages the care of patients ages 18 to 67. The average life span of people with CF is 35 years, but she has a number of patients in their 40s and 50s. She also manages the care of patients at an outpatient clinic for the amyotrophic lateral sclerosis population.
At the clinic level, Robichaud is part of a multidisciplinary team that includes a pulmonologist, a physical therapist, a respiratory therapist, a nutritionist, and a social worker. Robichaud accompanies the pulmonologist when he sees patients in the treatment room.
During the clinic sessions, other members of the team see the patients separately. Team members record what they discuss with the patient on a computer, including changes in treatment plans and other recommendations. When the patients leave, they receive a copy of the combined clinic notes made by Robichaud and the pulmonologist.
The team holds a separate clinic for patients with CF-acquired diabetes, adding an endocrinologist and a diabetes nurse to the team.
About half of the patients are hospitalized at least once or twice a year and lead active lives the rest of the time. Their average length of stay is four to five days. A few patients are in and out of the hospital frequently.
Because of her long involvement with her patients and her in-depth knowledge of their conditions, Robichaud often is able to negotiate with insurance companies to extend the length of stay when she thinks it’s necessary.
"We’ve been challenged by insurance companies on only two admissions, and we won both on appeal," she says.
In between visits to the clinic and hospital, Robichaud’s patients contact her frequently by telephone or e-mail.
"I do a lot more work on the telephone than I ever thought I would. It comes with experience in knowing the disease and the patients. The patients look to me to be their advocate," she says.
Robichaud makes an effort to visit her patients in their homes as often as she can.
"If we go into the home, we can prevent problems because we see what the home is like," she says. She notes that CF is a disease of malnutrition because it impedes the body’s ability to absorb food. "We can look at what kind of food is in the refrigerator, and we can make sure they are doing therapy," she says.
"Seeing our patients in the home is a positive experience. Before I get to know them well, they’re more likely to talk frankly and on a personal basis in the home as opposed to in the clinic. They know you’re there because you’re interested in them," she says.
Robichaud works closely with the hospital’s social worker to see that the patients get the services they need at the clinic and hospital. For instance, patients may call her to say their car won’t start and they have to get to a clinic appointment or that they’ve run out of money for food.
Often, the co-pay for the nebulized antibiotics that patients need is high, putting a strain on the family’s budget.
"These patients are on multiple medications, they have a lot of psychological issues, and they need to follow a proper diet in order to avoid exacerbations of their disease," she says.
Dental care is another issue, because a tooth or mouth infection can spread into their bloodstream and their lungs. Many CF patients are on Medicaid, and few dentists will take them.
When her CF patients become eligible for a bilateral lung transplant, Robichaud coordinates their care with the hospital where the surgery is performed.
The clinic sees each patient a minimum of four times a year, but many are in touch with Robichaud by telephone or e-mail on a weekly or even daily basis.
"They know to call if they have a cold because it can develop into an infection. I talk to them about what treatment they should do at home and make sure they have the prescriptions they need," she says.
When a patient calls Robichaud because he or she has a cold or a fever, she talks with the patient about the symptoms and decides whether the patient should be seen in the clinic.
"We discuss what they can do for therapy at home, such as using nebulized antibiotics, as a way to avoid them coming into the hospital," she says.
Patients with an advanced disease state have ports that allow them to self-administer IV antibiotics at home. "Some are so experienced that we feel they can get as good care at home as they could get in the hospital," she says.
Because many of the patients are depressed due to their chronic disease, Robichaud also works closely with the social worker.
Lately, Robichaud has been working with the CF patient and family advisory group, created to work with the clinical staff on ways to improve care for the patients.
"We are asking our patients and family members what they think about the care they’re getting and how they think it can be improved. They’re part of every decision. I think both sides have learned a great deal," she says.
The group was successful in getting the New Hampshire legislature to develop a protocol for genetic testing for CF.
Advisory group addresses infection control
The patient and family advisory committee is looking at the Dartmouth-Hitchcock Medical Center’s CF infection control policy, developed with the help of the Cystic Fibrosis Foundation.
"There is a bacterial infection that affects only CF patients. We can pass this bacteria from one patient to another just by having it on our clothes. It’s a very aggressive infection, and we feel that the only way to prevent cross-contamination is for everyone in the clinic and inpatient hospital to put on gowns and gloves when they see patients," she says.
When the infection control initiative was begun, hospitalized patients felt that some staff members weren’t coming to their rooms as often because it took time to put on gowns and gloves. Others were coming in without gowns and gloves on.
"The patients were brought into the process, and they have talked to the staff about the importance of wearing gowns and gloves. There have been outbreaks at other hospitals, but we haven’t had any problem," she says.
The advisory committee worked with the clinicians on an educational program to make sure patients clean their nebulizers thoroughly in order to avoid infections.
"We discovered that only one of our patients really understood the infection control guidelines for nebulizers. After a year-long project, we’ve brought it up to 84%," she says.
The project was so successful that other programs across the country have adopted it.
A case management program that follows adults with cystic fibrosis (CF) through the continuum of care has paid off for Dartmouth-Hitchcock Medical Center in Lebanon, NH.Subscribe Now for Access
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