Biotechnology Healthcare - November/December 2008 - (Page 39) Lifestyle: where care delivery becomes personalized T he patient’s lifestyle affects everything from drug supplies needed to the actual course of treatment. Although administration of clotting factor by peripheral intravenous injection is optimal (Ewenstein 2004), the patient’s physician may determine that implanting a central venous access device might be the best way to administer the clotting factor for patients with small veins or for children who require frequent injections. Specialty pharmacy personnel can provide training for the patient and family about care of the implanted device to help avoid complications. Another lifestyle consideration is activity level. Protective gear, such as helmets and padding, are needed for toddlers, especially when they are learning to walk. As patients grow older, a hemophilia treatment center’s clinical team — which usually includes a physical therapist — can recommend an individualized exercise program to strengthen and preserve muscle and joint function. Certainly, patients should avoid contact sports, such as football. Sports such as tennis, soccer, running, and baseball carry “medium risks” for bleeds because the physical, social, and psychological benefits often outweigh the risks (National Hemophilia Foundation 2006, Canadian Hemophilia Society 2006). During vacations and business travel, patients should bring supplies and equipment for transporting their clotting factor. given person. If bleeds start to affect joint function, an orthopedic surgeon becomes a core member of this team. The specialty pharmacy should have a support structure that provides collaboration with treatment centers, as well as round-theclock access to clinicians and home health care follow-up. The goal is clear: to prevent bleeds and establish procedures for administering the best course of treatment if a bleed occurs. Appropriate intervention. A number of factors influence the treatment setting: site of the bleed, family knowledge and skill, and the knowledge of local medical personnel. People with hemophilia and their caregivers either can manage treatment at home with nursing as- sistance or proceed to a medical facility, such as a hemophilia treatment center or emergency room. Timely response and knowledge of what to do or how to seek help on the part of the patient or family member are critical when a bleed occurs. The primary course of treatment is replacement of the deficient clotting factor. Ideally, infusion should occur within 3 hours of detection of a bleed to minimize the risk of longterm damage. UTILIZATION MANAGEMENT In patients who have hemophilia A, 1 unit of factor VIII/kg increases the clotting factor level in the blood by about 2 percent. The target levels of factor correction in patients with hemophilia B are the same as in patients with hemophilia A; however, the dose of the clotting factor should be higher because 1 unit of factor IX raises the circulating level by only 1 percent (Gioia 2004). Clotting factor prescriptions are not written in a manner in which most of us are familiar, such as “10 mg once a day.” Instead, clotting factor prescriptions are written as ranges. For example, one person may be prescribed a prophylactic dose of 2,000 units +/–10 percent, three times weekly, while another may be prescribed 1,500–1,700 units, three times weekly. Several variables contribute to the complexity of clotting factor dosing: the severity of the disorder, weight of the patient and manufacturing of clotting factor. Additionally, each patient may require varying doses for bleeds in different locations of the body. This is an important variable because bleeds in some locations — such as in the throat, eye, GI, pelvic muscle, or central nervous system — are more difficult to control (Gioia 2004). Precise management of clotting factor can help to reduce waste and minimize healthcare costs. A utilization management program can help to ensure that patients are using clotting factor and supplies optimally. By monitoring bleeds, clotting factor inventory, utilization patterns, and use of adjunctive therapies, specialty pharmacists can assess treatment, facilitate communication between patients and their physicians, and help to optimize outcomes. Some specialty pharmacies actively manage doses of clotting factor to achieve a near-zero variance from the number of prescribed units. They stock clotting factor NOVEMBER/DECEMBER 2008 · BIOTECHNOLOGY HEALTHCARE 39
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