Critical Path Network
Sickle cell protocol helps patients' self-management
Initiative led to communitywide task force
A treatment protocol and a communitywide task force are among the initiatives Harris Methodist Southwest Hospital in Fort Worth, TX, has initiated to help adults with sickle cell disease learn to manage their condition and limit their visits to the hospital.
The effort started a few years ago when a multidisciplinary team at Harris Methodist Southwest collaborated with their counterparts at their sister facility Harris Methodist Fort Worth Hospital to develop a treatment protocol for adult sickle cell patients, aimed at improving the consistency of care and decreasing the length of stay.
Red blood cells in patients with sickle cell disease are crescent- or sickle-shaped and can build up in the small blood vessels in the body, potentially causing joint pain, stroke, heart attack, and other problems.
The team looked at protocols at hospitals throughout the country and modeled its sickle cell protocol after the protocol at Grady Memorial Hospital in Atlanta.
"With the establishment of the protocol, we were successful in decreasing the length of stay for our patients. However, a lot of patients were just going from one hospital emergency room to the next to get their pain under control and we realized we were not really fixing the problems," says Linda Humphries, RN, CNS, CCRN, clinical nurse specialist who served as chair of the task force that developed the protocol for Harris Methodist Southwest Hospital.
That's when case managers and clinical nurse specialists decided to look beyond the walls of their hospital to find a solution to the problem. Along with their counterparts at Harris Methodist Fort Worth Hospital, they began meeting with the Sickle Cell Disease Association, the Tarrant County Public Health Department, and Cooks Children's Hospital to develop a plan to better manage the care of adults with sickle cell across all of Fort Worth and Tarrant County.
"During our first meeting with the Sickle Cell Disease Association, they were surprised to learn that the adult population is not receiving constant care, that they go from hospital to hospital for pain control and have trouble finding hematologists and pain management specialists who will treat them. We opened up a lot of eyes out there as to the need for consistent care for the adults," Humphries says.
The Fort Worth area has comprehensive management program for children with sickle cell disease but when they become adults, there isn't a program to support them.
"The children's program has done a good job at improving the quality of care and life expectancy but when these patients turn 18, they often go from hospital to hospital to manage the pain. They need help with other aspects of care as well," Humphries says.
The traditional management for sickle cell is to get the body rehydrated and manage the severe pain, then get the patient back into normal activities.
"A lot of patients just want to have the pain managed. They have gotten used to coming to the emergency room and getting pain medication for as long as they feel like they need it. We are trying to change that and help them avoid going into crisis," she says.
Before the protocol was instituted, many patients were staying in the hospital on IV pain medication for as long as 30 days. Then, shortly after discharge the patients would be back at Harris Methodist Southwest or another hospital seeking pain relief.
"It wasn't working. We weren't helping anyone," Humphries says.
The new protocol aims to get them rehydrated and onto oral pain medication in two to three days, starting with treating the pain aggressively as soon as they show up in the ED.
"These individuals don't look like they are acutely ill but if they sit in the emergency room for hours waiting to be seen, their pain will exacerbate and it will take a long time to get the pain controlled after they are admitted," Humphries says.
When patients present in the ED with sickle cell symptoms, the physicians order laboratory and other diagnostic tests work to verify that the patients are experiencing what may be a crisis.
"We make sure we address any immediate secondary issues. If there is a crisis and they are truly sick, they are at risk of having a stroke or long-term heart problems. We want to make sure that is ruled out," Humphries reports.
While in the ED, the patients are started on IV fluids to rehydrate them and given a significant dosage of pain medicine.
If they are admitted, they are put on patient-controlled analgesia.
When the patients are in the hospital, case managers are a crucial part of the treatment team working with the patient to get their disease under control, says Betsy Lowery, RHIA, quality manager.
"These patients need to take control of managing their disease. They hurt, they come to the hospital for pain medication, and after discharge the whole cycle starts over again. We are re-educating them to know that there is a better way of coping with their disease," she explains.
The case managers and clinical nurse specialists visit patients in the sickle cell program every day, meet with physicians, and coordinate case conferences.
"We are trying to make sure that everybody understands the process and is saying the same thing to the patient. We've done a lot of patient, staff, and physician education to implement this protocol," Lowery says.
The goal is to provide consistency and quality patient care, decrease the length of stay, and improve the patients' quality of life at home.
When sickle cell patients are treated in the hospital, they receive IV fluids and pain medication until their appetite improves and they can start taking oral pain medication.
"In addition to rehydration and pain management, we start managing other issues, such as an underlying infection. We get them up and moving and address their psychosocial needs," Lowery says.
The case managers work in collaboration with the clinical nurse specialists to manage the care of the sickle cell patients and to educate the patients so they can manage the illness on their own with community support. They teach the patients that if they know what triggers their pain or what causes them to go into crisis and take care of themselves, sickle cell disease is manageable.
Triggers can include increased activity levels, increases in stress, and changes in temperature. If sickle cell patients overexert themselves or become dehydrated, it can cause them to go into crisis.
"Getting the flu can trigger a crisis. They don't tolerate illness as well as someone who is basically healthy," Humphries says.
A lot of people who have sickle cell disease are rarely hospitalized because they are able to keep their disease under control, she says.
"When I talk to patients in the hospital, I tell them that their disease is not a hopeless situation, that they have the potential to make some changes and manage the disease. It's a matter of finding the right resources," Humphries says.
Sickle cell disease is a chronic disease that affects all parts of a patient's life, Lowery points out.
The case managers assess the patients' psychosocial needs and how well they will be able to manage on their own after discharge.
"Some of the patients could be classified as disabled. Some patients are unable to work. Some can work only sporadically, which causes economic issues. Some have no family support and are on their own. We try to connect them with community resources that can support them when they go home," Lowery says.
The citywide task force is working to establish a program that transitions sickle cell patients from the adolescent program into an adult one and to get all the hospitals in the area involved in developing a consistent plan of care throughout the continuum of care, from the emergency department to inpatient units.
"One of the biggest problems is that they need a hematologist and pain control specialists and can't find one. Most are on Medicaid or Medicare or are self-pay patients. Sickle cell is not an easy condition to treat," Lowery says.
The task force is working with the Medical Association of Tarrant County to help identify specialists who will treat the patients.
"With that and the advent of the day clinic, we hope to be able to educate the sickle cell disease patients to manage their disease. We want to educate them so that if they start having pain, they can be evaluated immediately and started on fluid and pain education so they can avert hospitalization," Lowery reports.
A treatment protocol and a communitywide task force are among the initiatives Harris Methodist Southwest Hospital in Fort Worth, TX, has initiated to help adults with sickle cell disease learn to manage their condition and limit their visits to the hospital.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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