Patients receiving deferasirox should be appropriatelyscreened and monitored for risk of gastrointestinal hemorrhageand for serious allergic reactions, such as skin rashes.21If the latter are severe, treatment should be stopped andpatients should contact their healthcare providerimmediately.
Deferasirox tablets should be dissolved completely inwater, orange juice, or apple juice, which should be drunkimmediately. Any residue should be re-suspended in liquidand swallowed. The tablets should not be swallowed whole,chewed, or crushed.21 Deferasirox should be optimallyadministered at least 30 minutes prior to a meal; whenadministered less than 30 minutes beforehand, bioavailabilitybecomes more dependent on food content, increasingas the fat content increases. Consistency in administrationcan limit this variability.12 Deferasirox should not be takenwith aluminum-containing antacids.21
While deferasirox oral therapy does not cause the adverseevents associated with deferoxamine infusions, it is neverthelessassociated with common adverse events, which mustbe managed (Table 5). In pivotal clinical trials of deferasirox,mild, nonprogressive increases in serum creatinineoccurred in about one-third of patients; levels returnedspontaneously to baseline in more than two-thirds of theseindividuals while on therapy.3
Improving Patient Management and EducationManaging patients with beta-thalassemia, SCD, MDS, andtransfusion-induced iron overload requires a collaborativeapproach that involves physicians and nurses, as well as thepatients themselves. A protocol for such collaboration isshown in (Figure 1). It is also important to have a systemfor patient education and monitoring (Figure 2). To providequality care, the Iron Overload Nurse Ambassador(IONA) program (www.ironoverloadnurses.com) alsorecommends the following49:
- Check the transfusion history of all patients • to help ensure that intermittently transfused patients are monitored appropriately, as some may be nearing their 20th unit of RBCs. Reviewing records for the potential risk of iron overload and other problems improves patient care.
- Make consistent communication with other team members a priority. This is essential to improve and maintain quality care. Speak directly with physicians to offer information about patients. This encourages everyone on the team to monitor risk for iron overload.
- Create a communication sheet to include with each patient’s chart, noting the date when the healthcare team has been notified of a patient’s iron overload status. This provides a record of potential risk and ensures that everyone involved in that patient’s care has been notified of risk alerts in a timely fashion.
For more, see Improve Your Skills in Monitoring for IronOverload and Providing Patient Education below andResources for Healthcare Providers and Patient at the bottom of the article.
IMPROVE YOUR SKILLS IN MONITORING FOR IRON OVERLOAD
AND PROVIDING PATIENT EDUCATION
The Iron Overload Nurse Ambassador (IONA) program is anationwide community of nurses dedicated to educatingpatients, nurse colleagues, and physicians about the risks oftransfusional iron overload and the importance of monitoringat-risk patients. The IONA Web site discusses the causes,consequences, diagnosis, and management of iron toxicity.Tables, figures, flow charts, animation, and other aidsclarify core concepts. A serum ferritin tracker, transfusiontracker, patient education protocol, and monitoring protocolare available as downloadable PDF files. A quarterly digitalnewsletter, IONA Links, shares best practices for the care ofpatients receiving blood transfusions. A resources sectionincludes links to Webcasts on treatment of iron overload andother educational programs. Membership in IONA is free; amembership application form is available on the Web site athttp://www.ironoverloadnurses.com.
Improving adherence to therapy
As iron chelation therapy becomes increasingly tailored tothe specific needs of individual patients,50 adherence to thetreatment regimen is critical, especially since iron overloadis asymptomatic until serious problems arise. Graphics withsimple illustrations can help educate patients about ironoverload and its potential health risks. For example, a serumferritin tracking chart can help patients see the positiveeffects of chelation (ie, a decreasing serum ferritin level).Managing adverse events effectively and keeping the medicationregimen simple can also help with adherence.
Even though deferasirox is preferred by patients due toconvenience, no injection-site soreness, and improvedquality of life,44 issues with nonadherence remain. In astudy of patients with SCD taking deferasirox, reasons citedfor nonadherence included difficulty with insurance coverage,taste, forgetfulness, somatic complaints, a subjectivefeeling that chelation therapy was not needed, and uncertaintyabout the proper dose.51
Given such potential obstacles, providing positive reinforcementto patients is important. Continuing educationis necessary—and not just for its knowledge value; patientsare influenced by whether they perceive that their healthcareproviders believe something is important. If necessary, askthe patient directly whether the prescribed medication isbeing taken—and taken as directed. If not, ask why. Thentry to address those reasons. Parental and family support isalso recommended, especially when patients are childrenor adolescents. Every attempt should be made to accommodateuse of chelating agents within the patient’s and thepatient’s family’s existing lifestyle.18
Patients with beta-thalassemia, SCD, and MDS increasingly receive blood transfusions for chronic anemia because it improves outcomes. This creates a risk for developing transfusion-related iron overload. Iron overload is asymptomatic until diagnostic testing reveals it, which makes monitoring for this potentially lethal condition crucial for nurses who care for patients receiving regular transfusions. Iron overload not only represents a serious health risk and could affect how well patients feel, but if left undiagnosed and untreated, it can complicate the course of their disease, making it more difficult to manage. Managing adverse events resulting from chelation therapy is important for adherence. Patient education is important for adherence, too, and should be an ongoing part of care.