Best Practices in Patient Navigation – Chronic Myelogenous Leukemia and Acute Myelogenous Leukemia Edition

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Effective Navigation of Patients with Chronic Myelogenous Leukemia or Acute Myelogenous Leukemia

Barbara Barnes Rogers, CRNP, MN, AOCN, ANP-BC 

Patients with chronic myelogenous leukemia (CML) usually exhibit anemia, leukocytosis, and normal or elevated platelet levels at the time of diagnosis; however, approximately one-third of patients are asymptomatic at diagnosis.1 Symptoms of the disease are usually gradual in onset and are often related to the altered blood counts. As a result, patients with CML may experience malaise and tend to become easily fatigued.1 They may also develop an enlarged spleen, which may lead to anorexia, abdominal discomfort, and early satiety. Symptoms of hypermetabolism, such as night sweats, heat intolerance, and weight loss, may also occur (although less frequently).1

Although many of the initial symptoms associated with CML tend to resolve once therapy is under way, some patients will need to contend with various side effects related to the agents they are taking. For example, the use of tyrosine kinase inhibitors (TKIs) may cause anemia, thrombocytopenia, leukemia, nausea, vomiting, diarrhea, heartburn, and rash.1 Other side effects that have been observed with treatments for CML include pleural effusion, prolonged QT interval, hepatic and electrolyte abnormalities, tumor lysis syndrome, and arterial and venous thrombosis.2

Acute myelogenous leukemia (AML) is a malignancy characterized by impaired production of normal blood cells; this may manifest as anemia, thrombocytopenia, and low, normal, or high white blood cell (WBC) counts, depending on the number of leukemic cells in the blood.3 Clinical features of AML may vary with different morphologic variants. Patients usually present with signs and symptoms of anemia (pallor, fatigue, weakness, and palpitations and dyspnea on exertion) or thrombocytopenia (ecchymosis, petechiae, epistaxis, gingival bleeding, conjunctival hemorrhages, and prolonged bleeding even after minor cuts). Symptoms such as anorexia, weight loss, and fever may also be present. Patients with AML may show signs of leukostasis, which include altered mental status, angina, ocular effects, patchy or diffuse infiltrates of the lungs, priapism, or retinal hemorrhage.

Organ infiltration with leukemic cells is a potential clinical feature associated with AML. Patients with organ infiltration may experience bone pain, gingival leukemia (gum infiltrates), hepatomegaly, joint pain, leukemia cutis (skin infiltrates), lymphadenopathy, and splenomegaly.1,3 Although a low WBC count is not very common at the time of diagnosis, it frequently occurs during treatment. Significant anemia and thrombocytopenia are also commonly observed once patients begin therapy, as is tumor lysis syndrome (during early stages of therapy). Oral mucositis and nausea are other treatment-related toxicities that may frequently occur as a result of various therapies for AML.3

In the oncology setting, nurse navigation services focus on the identification and mitigation of various obstacles that patients are likely to face during the continuum of care. In a 2008 study, Lin and colleagues sought to identify and compare, among other parameters, the types of barriers to care typically encountered by patients who were recently diagnosed with cancer, and the amount of time that nurse navigators spent to address these barriers. The investigators reported that the 3 problems that required most of the navigators’ time were related to financial, transportation, and end-of-life issues.4 Additional problems cited were arrangements for dependent care, scheduling of appointments, and assistance with activities of daily living. Results from this study reflect the wide range of obstacles that patients with cancer face and the important role of nurse navigators in meeting patient needs on various levels. Some resources that may be helpful to patients are shown in the Table.

With the approval of several orally administered TKIs, most patients with CML now receive care in the ambulatory setting. It is important that these patients are carefully educated on the prevention, identification, and management of side effects that may occur with the use of these agents. In addition, since TKIs may interact with other drugs, patients should be aware of potential drug–drug interactions and know how to avoid them. Additional responsibilities of the nurse navigator include reiterating to patients the importance of adherence to therapy, as well as follow-up appointments so that the medical team can accurately assess response to treatment.2


Conversely, patients with AML typically receive a substantial proportion of their care in the hospital, and the transition between the hospital and ambulatory care may be stressful and confusing to them. Effective navigation services are critical for these patients to promote the successful coordination of services between care settings.5 Although most treatment-related side effects and psychosocial issues are addressed while the individual is still an inpatient, issues and complications may still occur after discharge. The nurse navigator plays a key role in facilitating the transition process by educating patients about potential lingering side effects (eg, myelosuppression, nausea and vomiting or diminished appetite) and addressing any fears they may have about the next phase of treatment. Patients’ fears may be allayed when they are educated about the next phase of treatment, which may include additional hospitalization for consolidation treatment such as high-dose cytarabine and/or a hematopoietic stem-cell transplant.3,6 By providing the patient with information regarding his or her ongoing treatment, the nurse navigator can help to reduce anxiety and improve quality of life.7

The roles and responsibilities of nurse navigators will vary to some degree, depending on the setting in which they are employed. In the management of patients with CML or AML, there are numerous opportunities to positively impact several aspects of care. Effective navigation strategies may result in lower stress levels for patients who transition between settings of care, a lower incidence of disease- and treatment-related adverse events, and better adherence rates to therapy, all of which can lead to improved overall outcomes.


      1. Lichtman M, Kaushansky K, Kipps TJ, et al. Williams Manual of Hematology. 8th ed. New York, NY: McGraw Hill Medical; 2011:307-322.
      2. Viele CS. Myeloproliferative neoplasms (Ph–) and chronic myeloid leukemias. In: Olsen M, Zitella LJ, eds. Hematologic Malignancies in Adults. 2013. Pittsburgh, PA: Oncology Nursing Society; 2013:19-50.
      3. Peterson GJ, Trautman K, Hoffner B, Zakrocki J. Acute myeloid leukemia and acute leukemias of ambiguous lineage. In: Olsen M, Zitella LJ, eds. Hematologic Malignancies in Adults. 2013. Pittsburgh, PA: Oncology Nursing Society; 2013:101-156.
      4. Lin CJ, Schwaderer KA, Morgenlander KH, et al. Factors associated with patient navigators’ time spent on reducing barriers to cancer treatment. J Natl Med Assoc. 2008;100:1290-1297.
      5. Trossman S. Keeping patients on course. The American Nurse website. Accessed November 1, 2015.
      6. Simon S. Navigators help cancer patients manage their care. American Cancer Society website.
      manage-their-care. December 6, 2013. Accessed November 1, 2015.
      7. Desmini EM, Kennedy J, Hesler MF, et al. Making the case for nurse navigators. Oncology Issues. 2011;26:26-32.

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