Symptom Self-Management for Adolescents/Young Adults With Cancer

Lauri Linder, PhD, APRN, CPON

As part of our coverage of the Oncology Nursing Society (ONS) 41st Annual Congress held April 28–May 1 in San Antonio, Texas, today we are speaking with Lauri Linder, PhD, APRN, CPON, assistant professor at the University of Utah College of Nursing. At this year’s meeting, Dr. Linder will be participating in a hot topic session discussing symptom self-management strategies reported by adolescents and young adults (AYAs) with cancer.

 -Interviewed by Leah Lawrence 

Cancer Network: Dr. Linder, you are participating in a session discussing symptom self-management strategies among AYAs with cancer. Can you first discuss with us some of the most common symptoms that these patients are experiencing?

Lauri Linder: The participants in the study were 72 AYAs. These were individuals 13 to 29 years of age who had just started a new cycle of chemotherapy. The most common priority symptoms that our patients reported were nausea, feeling drowsy, lack of appetite, lack of energy, and pain. Some other common symptoms in this group were hair loss, changes in how food tastes, difficulty sleeping, dry mouth, weight loss, and feeling irritable.

Cancer Network: Self-management seems like an unusual topic. Can you discuss what exactly self-management is and why it is important?

Lauri Linder: Self-management is a topic that has been around for a while, but it is one that is gaining more emphasis, especially for patients who are living with chronic illness. I am going to share the definition from the literature, which is the definition our team has been using to guide our work. That is that self-management is the process by which individuals with chronic illness integrate strategies that allow them to cope with the illness in the context of their day-to-day life.

For illnesses such as cancer, many of our patients are experiencing multiple symptoms that are going to wax and wane over the course of their illness and, additionally, much of the process of managing these symptoms is occurring in the home rather than the hospital setting. Much of cancer care is happening in an ambulatory setting vs an in-patient setting. Identifying and implementing symptom self-management strategies really supports the well-being of our patients and helps minimize unnecessary visits within the healthcare system. It keeps patients in the home, school, or work setting, with more time to do the things that are important to them.

Cancer Network: In your talk, what are some of the most common or effective self-management techniques that you will discuss?

Lauri Linder: Given our current state of the science in symptom self-management, specifically with AYAs with cancer, at this point I am not sure that we can speak to most effective self-management strategies; however, our work has helped identify some of the most common strategies used by AYAs within our sample.

We found that our AYAs were using a pretty broad range of strategies, some of which they were implementing independently, possibly through some trial and error efforts of their own, and others that were really more shared in nature and relied on having an engaged healthcare provider. Even though we use that term, self-management, we also need to keep in mind that it is not just the patient on his own or her own, but the provider still being engaged and supporting the patient as well.

Among the strategies that we identified, overall, using medications was the most common strategy that our sample reported and was named in response to nausea and pain. Some of the other common strategies included implementing sleep/rest strategies. For some, this was getting more sleep. For others, this meant incorporating more deliberate rest periods or naps into their day. Our AYAs also related how they would adjust their eating patterns, particularly in response to nausea or lack of appetite. Others related efforts to engage in some type of physical activity to manage their fatigue.

Something else that we found important and interesting was that some AYAs related “nothing” or “don’t know” as a strategy. Unfortunately, we didn’t have the opportunity to really explore the meaning of these responses. But these responses may indicate opportunities for us as providers to further explore whether saying nothing means that this AYA has had past failed attempts to manage symptoms or whether they just don’t know what to do or where to start. That definitely gave us some good data to further explore.

Cancer Network: How might these strategies differ among this younger population of patients with cancer compared with older patients?

Lauri Linder: I think that really understanding symptom self-management strategies used by AYAs with cancer is really an emerging area of science. I don’t want to be too premature in saying that we have strong evidence to speak to differences in self-management strategies between AYAs and older adults at this point in time.

From a development perspective, we know that AYAs are a distinct group. Some of their key developmental tasks are developing independence from their family of origin. They are also working to gain independence in their own health management. We do want to support them in initiating potential strategies that are going to be meaningful to them, but also be available to them to provide guidance based on some of our current evidence.

Cancer Network: What is the role of a nurse in communicating or educating about these self-management strategies?

Lauri Linder: Even though we use that term, self-management, this doesn’t exclude the role of the nurse or other members of the healthcare team. We do recognize that many of these strategies are somewhat independent and some are more shared. As we have learned from our data, many of the strategies that AYAs are using rely on an engaged healthcare provider, and nurses are very often that frontline provider with whom our patients and families are communicating and reaching out to. Managing these multiple illness-related symptoms and forming effective partnerships with healthcare providers are key tasks of self-management.

Even going back to our data, medications were a very important aspect of symptom self-management. I see nurses in a key role to explore how patients are using medication and that they understand how to use them. Just because we give someone a prescription for pain medication doesn’t necessarily mean that the patient is going to know how to use it.

Nurses are also in a role to explore if these strategies are effective or ineffective. Nurses can really be an advocate for a change in medication or dose. Nurses are also well positioned to be applying principles of evidence-based practice and suggesting some of the non-pharmacologic symptom self-management strategies. In working with our AYAs, these are not necessarily a group of patients that want to be told what to do, but want to be supported in making choices. Rather than saying, “Getting out and exercising will help your fatigue be less,” another approach might be, “Other people your age have said that doing some type of activity each day has helped them to feel less fatigued.” What the patient has in common with other people their age might be helpful vs me as the nurse telling them what to do.

Cancer Network: What would you say is the most important takeaway message about this topic?

Lauri Linder: Again, with this being a new area, I think coming away with an awareness that AYAs are using a variety of independent and shared symptom self-management strategies, running the gambit from prescription medications to adjusting sleep patterns, or using some non-pharmacologic approach such as aromatherapy. Also, nurses are in a very important position to explore these strategies that AYAs are using and support them in implementing these strategies that may be helpful to alleviate their symptoms in both in-patient and ambulatory settings.

Cancer Network: Thank you for taking a few minutes today to talk to us about this important topic.