As part of a multidisciplinary team education project on acute lymphocytic leukemia (ALL), ACCC recently released an environmental scan that provides an overview of the current landscape for ALL diagnosis and treatment, along with potential opportunities to improve care for this patient population. In this post—the first in a three-part series—guest blogger Sandra Kurtin, PhD, ANP-C, AOCN, offers perspective on the complex challenges that ALL presents for patients, caregivers, and providers.
The diagnosis of acute lymphocytic leukemia (also known as acute lymphoblastic leukemia) is life changing and typically abrupt—a shock to patients and their families. Most patients newly diagnosed with ALL move quickly from feeling normal and participating in typical daily activities to becoming acutely ill, requiring multiple tests and procedures, often hospitalization, and immediate treatment. Put another way, the diagnosis plucks patients from their everyday lives and casts them into the complex, foreign, alternate reality of living with acute lymphoblastic leukemia.
This is not a simple journey for either patients or providers. Living with and treating ALL takes team support. It requires the patient along with a crew of caregivers (family, friends, neighbors, and others) and an interdisciplinary team of healthcare providers—collectively the “ALL Team.” Both from the patient and the provider perspectives, navigating this journey requires adaptation from day to day according to the changing needs of the patient and the complexity of the treatment regimen. The treatment of ALL includes some of the most complex regimens in oncology, integrating multiple drugs, routes of administration, and alternating sequences over a long period of time. ALL treatment may require intravenous, oral, subcutaneous, intramuscular, and intrathecal therapies, and at times, hospitalization. Gender plays a role, too. For men maintenance therapy may last for three years; while for women, this treatment may continue for least two years. For those patients with high-risk features, this journey may require an allogeneic stem cell transplant and the complexities this entails.
Beyond integrating the science, managing the nuanced journey for patients with ALL exemplifies the art of medicine. Optimal care requires knowing the drugs; understanding the complexity of the treatment regimens; and anticipating, mitigating and promptly managing toxicities—all with a focused awareness of the cadence and tempo of the disease for each patient. No two patients are the same.
As an artist begins with a new canvas, so we begin in practicing the art of medicine in ALL. Our canvas is the patient. Our art begins with the first steps of gathering information: Where is the patient in the disease trajectory? What is their risk profile? What realistically might their journey entail?
With the basic picture emerging, the patient and cancer care team face a critical first step in the art of managing ALL—determining the ultimate goals of treatment. For this discussion to focus the picture, questions must be answered immediately. These include:
While working through these questions quickly is overwhelming for patients and their caregivers, the time for decision-making is often short. Many times, patients with ALL will require immediate interventions, such as line placement; for some, placement of an Ommaya reservoir; and multiple other diagnostic tests. Descriptions of test results and treatment options are complex. Thus, effective and consistent communication between healthcare providers and the patient and their support network is essential to the art of managing ALL.
Once treatment decisions have been made, the focus for the “ALL Team” is on mitigating toxicity, optimizing treatment outcomes, and preserving quality of life. Cytopenias become a regular part of the journey. For some individuals these are serious enough to require hospitalization for neutropenic fevers, and for most, transfusions are needed during the most intensive treatment phases. If remission is achieved and the patient does not require transplant, maintenance therapy—as mentioned above—can extend for two or three years. Cumulative toxicities such as neuropathy or cardiotoxicity pose a risk to quality of life, and the risk of relapse is always looming. Finessing dosing of individual drugs, and modifying sequences when necessary, is like refining a complex and unique piece of art. Incorporating an interdisciplinary approach to management is key to mitigating adverse events and improving treatment outcomes.
Patients with ALL and their families spend a substantial amount of time with their care teams at healthcare facilities. The art of managing ALL lies in creating an “ALL Team” (social workers, nutrition, financial counselors, pharmacists, nurses, advanced practitioners, and multiple physician specialists) that with a primary team and the patient and caregivers work together to navigate this long, uncertain journey, ultimately creating the best opportunity for optimal outcomes, including quality of life.
Sandra Kurtin, PhD, ANP-C, AOCN, is Assistant Professor of Clinical Medicine, Adjunct Clinical Assistant Professor of Nursing at The University of Arizona; Division Chief, Advanced Practice Providers and Clinical Integration, at The University of Arizona Cancer Center. She serves on the Advisory Committee for ACCC’s Multidisciplinary Acute Lymphocytic Leukemia Care education project and has been involved in the care of patients with ALL for over 30 years.
