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Do We Have a Clue

The Treatment Burden for the Patient With Cancer?

Given, Barbara A. PhD, RN, FAAN; Given, Charles W. PhD; Vachon, Eric BSN, RN; Hershey, Denise PhD, MSN, RN

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doi: 10.1097/NCC.0000000000000408
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Many who read Cancer Nursing have spent most of their professional career providing patients with cancer with strategies to deal with their cancer treatments and the symptoms and toxicities they generate. Those who conduct intervention research propose rigorous detailed intervention designs to help patients with cancer endure recommended therapies. Interventions are designed to assist patients to effectively manage symptoms and adverse effects or to assist them with coping with the emotional issues they may experience during treatment.

Our current research uses symptom management strategies to foster adherence with targeted oral oncolytic medications for patients with advanced disease.1 As in previous research, the patients in this study have taught us that we do not have a clue! We had not considered the burden of taking oral oncolytics added to their lives. We had not come to appreciate how the addition of another intervention for patients with advanced cancer added more to their already complicated lives of living with cancer. Many of these patients are older, and most have additional comorbid conditions they are already managing. Most interventions for symptom management or adherence only assist patients with managing 1 chronic condition, but the more chronic conditions they have, the more work they need to perform, increasing their overall treatment burden. Here, we discuss treatment burden for the patient with preexisting chronic disease who now has a cancer diagnosis and propose recommendations for researchers to consider as they design interventions for clinicians to assist patients who are undergoing treatment with oral oncolytics.

Patients with cancer today are living longer because of more effective cancer treatment. These same patients are surviving cancer while also living with and managing multiple other chronic conditions. Increasing multimorbidity has brought increased care demands for patients with cancer and added considerations for healthcare providers. Patients with multiple chronic conditions, such as diabetes, hypertension, and Parkinson’s disease, who were given a diagnosis of breast, colon, or lung cancer, now have a quantum increase in the complexity and time they need to devote to their own ongoing care requirements. Depending on how these conditions progress, more time will be required to manage and coordinate their care. Current changes in cancer care, with shortened hospital stays and treatment with oral oncolytics, rather than intravenous chemotherapy, shift responsibilities and pose increased demands on patients with cancer with other comorbidities. Not only patients need to manage symptoms and monitor to detect reportable adverse effects associated with all of their chronic conditions, but also those on oral oncolytics also need to obtain and administer their oral agents, implement dosing strategies (many of which have complex regimens, with variations in dosage within 1 day, within cycles and rest periods), observe for adverse effects, and separate cancer-related adverse effects from those that are associated with their other chronic conditions. Adverse effects associated with interactions between their cancer and other medications pose an additional problem for patients attempting to manage multiple chronic conditions. Thus, the daily work patients are expected to perform to manage their cancer is added to the work they are already doing for their comorbid conditions, which must be integrated into their social, work, and family roles. Frequently, these treatment burdens occur among older patients with advanced cancer who also have little endurance, poor physical function, and multiple disease- and treatment-related symptoms.

Consider the following case: A 68-year-old woman newly diagnosed with renal cell carcinoma in November 2014 now has progressed to stage IV with metastasis to the lungs and adrenal gland. She also has history of cardiovascular disease, hypertension, arthritis, and renal failure. She is currently taking 17 medications, 13 of which were preexisting before the initiation of the study. These included multiple antihypertensives, diuretics, opioids, antiadrenergics, and supplements. Currently, the patient is being treated with the oral agent pazopanib at 800 mg/d, to be taken on an empty stomach 1 hour before meals. However, the patient was told to suspend this drug for 17 days because of hematuria and acute kidney injury. When this patient’s medical record was audited for the 5 months she was on the trial, we learned that she had undergone 2 surgeries and was hospitalized 3 times, for a total of 12 days. In addition, she exhibited a number of the following symptoms: anemia, severe weight loss, dyspnea, febrile neutropenia, fatigue, and pain. This patient’s healthcare setting was requiring her to be accountable and to explain changes in her health and to isolate which medication(s) are part of her problem. The patient needs to organize and coordinate her own care and appointments, adhere to her medications and self-monitor 2 or 3 treatment regimens, and carry out self-care of diet, exercise, and other health behaviors and daily life.

This real case exemplifies some of the challenges patients with a solid tumor cancer and multiple other chronic conditions need to manage. Consider the frequency of taking medications with different requirements as to when and how to schedule meals. This real case also exemplifies the challenges for the clinicians who work with the patient and the researcher who designs the intervention study and selects the outcome variable.

What does this mean for the clinician? Assessment tools need to be designed to evaluate the capacity of patients with cancer with multiple chronic diseases and assist them to integrate recommended cancer care into their lives. Medication reconciliation, for example, will be a key consideration for this population. Clinicians also need to assess and assist with areas in which patients may need extra support and guidance. As we assist these patients, we need to consider challenges associated with health literacy and the patient’s physical and/or emotional capacity. We need to consider how to make their treatment burden less demanding, which will lead to better overall adherence to their medications. These issues need to be continuously assessed over the care trajectory, and adjustments need to be made to usual planned and recommended care.

What does this mean for researchers? Intervention study designs need to consider multimorbidity and treatment burden as study variables. We need to use measures to understand the extent that multimorbidities affect the treatment burden in our studies. Counting the number of comorbidities does not capture the “load” of taking many medications. If one is planning an adherence study, how is adherence to the cancer drug to be assessed in light of the other drugs? If one has a symptom management intervention, how are symptoms of CVD, hypertension, and arthritis separate from those of cancer and cancer treatment? How do these factors affect the outcome variables? We need to think about how we sort out the etiology of symptom severity for symptoms that may also be associated with existing comorbidities, fatigue, pain, dyspnea, and limitations in function in patients with preexisting comorbidities such as hypertension, congestive heart failure, and arthritis. The development of interventions that integrate the management or work of chronic disease into cancer management that makes the patient’s work easier is needed to decrease patient load. We have to ask patients in our studies: do you think you can do what we are asking? How many hours per day are you already spending on care? How will you integrate this adherence and symptom management protocol? If we expect patients to follow our recommendations, we need to consider the work and time they are already spending and what we are asking of them. We need to consider how their existing care will influence implementation of our research intervention. Unless we determine what they already do, we will not know whether it is something they can really do, and this will affect both the implementation of the study and the outcome.

We did not consider treatment burden in our current study; it is clear that we must! Without considering this, recruitment, retention, and active engagement of participants in the intervention can be impacted. How does the treatment burden enter into patients who refuse to participate and those who say I am overwhelmed or those who say I am not interested? We must understand treatment demands, what we are asking patients to do, and how this affects our research implementation and results.


1. Given BA, Given CW. Improving Adherence to Oral Cancer Agents and Self Care of Symptoms Using an IVR study. 2013-2017. Funded by National Institute of Health, grant #R01CA16240101A1.


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