Relapsed/Refractory Disease


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Caring for a patient whose disease has relapsed or become refractory to a treatment and understanding how the patient is adjusting to the situation can be difficult. My patients who are beginning an oral medication after having undergone IV chemotherapy often do not understand how a pill could help their cancer. Several of my patients have been on a variety of treatments for ovarian carcinoma and are now starting oral therapies.

One patient’s husband is very supportive and assumes the role of cheerleader. He is always with her when she comes for visits and monitors her medications closely. The patient remains upbeat and comes to visits beautifully coiffed and dressed. Another patient, however, lives alone and has no obvious support system. She comes to visits very quiet and looking sad. She is not responsive to most offers of support from the staff and states that she can manage this independently. Both patients are adherent to therapy and are responding to their third/fourth-line of therapy. The characteristic these women have in common, along with other patients who have relapsed or refractory disease, is that they want to continue to live their lives.

Patients returning to treatment after a failed first-line therapy have unique needs that are very different from the needs of treatment-naïve patients.2 These patients and their loved ones are experiencing high levels of stress, likely related to the recurrence of their disease and the need for further therapy.2 Although these patients may have focused on certain approaches and information during their initial diagnosis, they may now wish to secure more in-depth information about the disease in an effort to understand why their disease relapsed.2 We need to take all of these characteristics into consideration. As patients’ caregivers, our efforts include recognition and understanding of their anxiety, tailoring information based on their current  needs, and the ability to engage a team of health care professionals, including social workers, to address the holistic needs that we as nurses are not always equipped to handle.2

Nonadherence

Identifying a patient who struggles with adherence can be a challenge and the barriers may not always be obvious. I had a patient who was illiterate and he struggled to follow his at-home oral medication regimen because he could not read and comprehend the labels. I sat down with him, listened to his stories about his life, and assessed him for ways in which he could be helped. After taking the time to have a more in-depth talk with this patient, I learned that if his pill container was filled when he was in the office, he would then take his medication correctly. Other issues with nonadherence include financial concerns.4 Several patients have recently told me that they could not afford their co-pays and therefore did not want to start the medications. A variety of resources, including foundations, advocacy groups, pharmaceutical assistance programs, etc, are available. Helping patients with overwhelmingly large co-pays obtain co-pay assistance is a vital role of the oncology care team.3,4

With emerging cancer therapies in the oncology arena, patients are now able to take oral medications at home.2,6 However, in many cases, this also means oncology nurses have less control over when, how, and even if, our patients take their medication.2,6 Nurses play a vital role in helping patients understand the importance of adherence and persistence. They are essential in helping identify the individual risk factors for each patient, including knowledge deficits regarding disease and medications, financial issues, lack of social support, fears regarding adverse effects, lack of effective communication between the patient and health care team, cultural issues, perception of benefits of the medication, complexity of the regimen, patient depression/distress, and inadequate clinician follow-up.1,2,4 Many patients do not fully understand the implications of missing doses or discontinuing treatment, and they may need encouragement and a great deal of support and empathy to adhere to the treatment plan.2

Helping patients understand both their disease and their medications is of the utmost importance.2 Patients and their families must be assessed and counseled in an empathetic and culturally sensitive manner.2 The effectiveness of the social support system should also be evaluated. Some patients may live with people who are not able or willing to be supportive as they cope with their illness and medication management.2,4 A factor vital to patient education is an assessment of the family’s, caregiver’s, or significant other’s knowledge, ability, and desire to learn.2 The current knowledge base learning desire/ability of these people should be checked and validated frequently throughout the patient’s treatment course.2,3

In addition, many oncology drugs are only available through specialty pharmacies, so obtaining accurate insurance information becomes particularly important.6 Communication must be open to effectively navigate the process of obtaining the medication and adhering to the treatment regimen.2,7 Whenever a new regimen is started, the patient should be closely monitored, especially during the first couple of months, using coaching techniques, calendars, pill boxes, and pill counts to assure adherence.2,4