The Importance of Patient Education: A Nurse’s Perspective

Lillie D. Shockney, RN, BS, MAS, ONN-CG
Editor-in-Chief, JONS; Program Director, AONN+; University Distinguished Service Professor of Breast Cancer, Administrative Director, The Johns Hopkins Breast Center; Director, John Hopkins Cancer Survivorship Programs; Professor of Surgery and Oncology, JHU School of Medicine; Co-Creator, Work Stride-Managing Cancer at Work

It is exciting to see that patients with advanced breast cancer are able to receive additional treatment options, because a primary concern of patients with stage IV breast cancer is a lack of awareness of laboratory and clinical research targeted for those battling advanced disease.

The new research data, created as outcomes from clinical trials, offer newfound hope to patients with advanced breast cancer by providing additional treatment options for those who have estrogen receptor–positive, human epidermal growth factor receptor 2–negative advanced breast cancer.

Table 3 in the main article lists some of the adverse events reported with ribociclib, reminding us that these new treatment options are not adverse event–free, with 99% of patients having some type of adverse event. Patients need to have detailed patient education regarding complications caused by the various therapies so that they are aware of them, prepared for them if they occur, and are in agreement to receive new therapy in light of adverse events, some of which may be severe.

There is such a focus on treatment that we can sometimes lose sight of the importance of maintaining patients’ quality of life. Nausea, fatigue, infection, and diarrhea may not appear worrisome compared with the benefit the patient will likely receive from therapy; however, it still needs to be the patient’s decision to receive the new drug or not. This requires asking patients what their goals of treatment are rather than assuming that any treatment they can access is what they will want to receive at any given time.

As nurses, we need to function as patients’ advocates and discuss therapy in terms that patients will understand, including what the treatment protocol involves, what serious and nonserious adverse events are likely to occur, and to ensure that patients want to receive this treatment, or any other treatment for that matter. The patient has the right to decline therapy. The only way patients can make treatment decisions is by making sure that patients are adequately informed, so that they can actively participate in the decision-making process about their care.

In addition, it is important that patients are aware of the out-of-pocket costs that they may incur, in the form of copayments and deductibles, which will likely affect their decision-making about treatment. Drug access through the pharmaceutical companies’ discount drug program may be the primary driver of whether a patient receives the treatment or declines it.

Figure 1 in the main article provides a visual representation of the role of cyclin-dependent kinase (CDK) 4 and CDK6 in inhibiting the cell cycle. However, it will be important to provide patients with more simplistic educational information so that they can understand the mechanism of action. Keep in mind that patients will leave the oncologist’s office and return to their homes, having to explain to their family members and friends the new therapy, and how it works. Patients need to feel confident about their explanations, as well as confident that this treatment will be beneficial to them.

Patient education should also include explicit information about how to recognize adverse events and measure their severity, and how to report these adverse events promptly. In addition, patients need to know what steps to take, proactively or as a recovery step, to prevent or diminish these adverse events.

As for ribociclib, it will be important to educate patients on being able to identify adverse events associated with its use, and to educate healthcare professionals on the appropriate strategies to prevent and/or treat adverse events when they occur. Ribociclib dose reduction, interruption, and/or discontinuation may be necessary based on patients’ individual tolerability. Ribociclib comes in a convenient dose (200-mg tablets) and packaging to allow for easy dose adjustments, without the need for a new prescription.1

All the adverse events that patients may have will affect their quality of life. Patients may still be in the phase of hope, in which they anticipate continued longevity with a preservation of quality of life, or they may have progressed to the next phase of hope, in which they recognize that they are dealing with a life-limiting disease that is beginning to directly impact their quality of life. If the latter is the case, patients will carefully weigh the risks and benefits of therapy before agreeing to receive it or making the decision to decline it.2

An effective way to help patients define their thought processes at this juncture is to ask them the following questions:

  1. How much do you know about your breast cancer?
  2. How much do you want to know about your breast cancer?
  3. What are you worrying most about?
  4. What are you hoping for?
  5. Tell me 3 things that give you joy.

These key questions can help nurses and oncologists to understand where patients are in their thought processes about their health status, and, in particular, what the patients’ current priorities are, because their priorities change over time.2

By contrast, some patients may want to try any potential treatment and may be reluctant to report adverse events, because they fear that they will have to discontinue treatment or will have to undergo a dose reduction. As part of their education, it is important to emphasize to patients the drugs that may place them at a high risk for morbidity or mortality if they do not report their adverse events and severity; this is important information for patients to understand and agree to do.

It is exhilarating to be able to share with patients additional treatment options that are specific to their prognostic factors. The hope is that extending patients’ lives will allow them to continue to achieve their life goals and enjoy milestone moments with their families, while preserving their quality of life to the highest degree possible.

Author Disclosure Statement
Ms Shockney reported no conflicts of interest.


  1. Kisqali (ribociclib) tablets [prescribing information]. East Hanover, NJ: Novartis; March 2017.
  2. Shockney LD. Fulfilling Hope: Supporting the Needs of Patients with Advanced Cancers. Hauppauge, NY: Nova Science Publishers; 2014.
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Last modified: June 25, 2018

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