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Recognizing the Unique Experiences of Cancer Among Adolescent and Young Adult Survivors

A Conversation With Brad Zebrack, PhD, MSW, MPH, FAPOS



Once clinicians know how adolescents and young adults are being affected by their cancer diagnosis, they can develop appropriate interventions to address their specific concerns.
— Brad Zebrack, PhD, MSW, MPH, FAPOS

Studies show that adolescent and young adult cancer survivors experience distinct challenges and quality-of-life issues from those experienced by either younger or older adult cancer survivors and that those challenges and issues can persist long after the cancer diagnosis and the end of treatment. Interruptions in education or career trajectory, concerns about fertility, dissatisfaction with body image, and difficulty establishing intimate relationships can all contribute to a lower health-related quality of life than older cancer survivors’ experience. Younger survivors are also more likely to have greater feelings of depression and anxiety than their older counterparts as well as a higher symptom burden.

Studies are now starting to examine the extent of the perceived negative and positive impacts of cancer on adolescents and young adults, and research by Brad Zebrack, PhD, MSW, MPH, FAPOS, and his colleagues is showing a mixed picture of the psychosocial ramifications of cancer in this population.1

In his study’s findings, the most prevalent areas of life negatively impacted by a cancer diagnosis were financial, body image, control over life, work plans, relationship with spouse/significant other, and plans for having children. On the positive side, adolescents and young adults reported having improved relationships with family members and friends, greater focused attention on future goals and purpose, and confidence in their ability to take care of their long-term health.

The ASCO Post talked with Dr. ­Zebrack, University of Michigan School of Social Work, Ann Arbor, about his research findings and the need for the development of evidence-based interventions to minimize the negative consequences of cancer and enhance the potential for personal growth in adolescent and young adult cancer survivors.


Guest Editor

Adolescent and Young Adult Oncology explores the unique physical, psychosocial, social, emotional, sexual, and financial challenges adolescents and young adults with cancer face. The column is guest edited by Brandon Hayes-Lattin, MD, FACP, Associate Professor of Medicine and Medical Director of the Adolescent and Young Adult Oncology Program at the Knight Cancer Institute at Oregon Health and Science University in Portland, Oregon.

Potential for Resiliency

The negative impact of cancer on the lives of adolescents and young adults is well documented. Please talk about what your research is showing about the positive impact of cancer on their lives.

This is a touchy subject to talk about. Research shows that survivors of all ages report the potential for positive, life-affirming experiences as a result of a cancer diagnosis, and it is important for us to learn more about those experiences, but there is a subset of patients who will never see having cancer as something positive. For those survivors, the experience will always be discomforting, painful, and perhaps result in the end of their life, and there is no way they or their family members would ever say there was anything positive that came out of having cancer. And this may be true across the board for adolescent and young adult cancer survivors.

What we should never do is suggest to patients that good things are going to come out of having cancer, and I have heard doctors say that to patients. There are elements of some young people’s lives that can promote this concept of resilience—an ability to bounce back after a serious illness—and that perhaps life will be better for some after a cancer experience. This type of resilience is possible, but we don’t yet know what the elements are that contribute to making that resiliency possible.

Is there an opportunity for personal growth for adolescents and young adults after a cancer diagnosis?

Yes, there may be. But what percentage of young adult cancer survivors will have the sense of expanding their life potential in the face of such adversity? We don’t know. That is why I’m being cautious about making definitive declarations on this subject. We need more research to fully understand the positive psychosocial impact of cancer in this age group. We are finding that some young adult cancer survivors feel like something good came out of the cancer experience, or we may find some element of that positive experience in almost all adolescent and young adult survivors; we just don’t know the answer.

On the flip side, we know a lot about the negative psychosocial impact of cancer on adolescents and young adults. For example, we know across the continuum of care, between 30% and 40% of these cancer survivors will experience depression and anxiety.2,3

Personal Growth in Older vs Younger Survivors

How does cancer affect the lives of younger and older survivors differently?

For an older person, say someone diagnosed with prostate cancer, the diagnosis may put him in a reflective mood and lead him to think about what he wants to do the rest of his life, which relationships might need mending, and how he wants his life to close. And that type of introspection is very positive. For a younger person diagnosed with Hodgkin lymphoma, for example, and just starting a career or relationship, the experience may be very different.

Now, is it possible for both older and younger survivors to experience personal growth? Maybe, but it may be manifested differently. The question we are trying to answer is, what is personal growth or transformation in these circumstances? As scientists, we are still trying to figure out the elements that constitute personal growth or transformation.

In regard to the primary personal relationships of younger and older patients, for a younger person, the key relationships are typically their parents, a boyfriend or girlfriend, or perhaps a new spouse. The primary relationships for older patients are likely to be their children or perhaps grandchildren. If there is a spouse, it is likely the relationship has been a lengthy one, so the issues and challenges in that relationship may be different from those in a newer relationship.

Current research suggests that for older adult cancer survivors, being married or in a committed relationship is very important, and patient outcomes are often better, especially for men. But for adolescents and young adults, the opposite may be true. Life for adolescents and young adults in a committed relationship or marriage might be more distressing than it is for single adolescent and young adult survivors, oftentimes due to the stress of sexual dysfunction, infertility, and worry over possible death.

Impact of Ethnicity or Race

Does research show which adolescent and young adult survivors are more likely to have greater personal growth after a cancer diagnosis?

Not that I’ve seen. In one of our studies,4 we looked at whether age, gender, socioeconomic status, or type of cancer influenced a person’s attitude after a cancer diagnosis, and none of those factors seemed to matter. What did impact whether a survivor had a positive or negative feeling about life after a cancer diagnosis was ethnicity or race.

Nonwhite patients reported higher levels of personal growth after their cancer diagnosis than white patients, and it may be because they are often stressed by elements of prejudice and discrimination in their daily lives and thus are primed to handle stressful events. I’m not saying this is a good thing, because there are many negative health effects associated with constant or accumulative stress. But there may be an acknowledgment that cancer is just another bad event to overcome and the impact on life is not as great as perhaps it would be for someone without that life ­experience.

Ask Questions to Engage Patients

How can oncologists help their adolescent and young adult patients minimize the negative impact of cancer on their lives? For example, should they screen early for issues such as depression and anxiety, provide counseling on fertility-preservation options, and initiate discussions about sexual function and health?

Yes, all of these interventions would be helpful throughout the continuum of care. To ascertain the immediate impact cancer is having on their adolescent and young adult patients, I suggest oncologists ask patients a series of questions such as, “What does it mean to you to have cancer?” or “How is cancer affecting your life?”

The answers to these questions will guide oncologists on the best way to help patients. Once clinicians have an understanding of how having cancer has disrupted the patients’ lives, they can engage with patients around their values and preferences and perhaps refer them to an oncology social worker for a deeper assessment of these concerns and help to work through those issues.

Instead of making a declarative statement to patients that they will likely be cured (if that is the case) and that all will be good again once treatment is completed, physicians can instead ask patients, “What do you need to get through this process?” Once clinicians know how adolescents and young adults are being affected by their cancer diagnosis, they can develop appropriate interventions to address their specific concerns. ■

Disclosure: Dr. Zebrack reported no potential conflicts of interest.

References

1. Bellizzi KM, Smith A, Schmidt S, et al: Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult. Cancer 118:5155-5162, 2012.

2. Zabora J, BrintzenhofeSzoc K, Curbow B, et al: The prevalence of psychological distress by cancer site. Psychooncology 10:19-28, 2001.

3. Carlson LE, Angen M, Cullum J, et al: High levels of untreated distress and fatigue in cancer patients. Br J Cancer 90:2297-2304, 2004.

4. Zebrack BJ, Corbett V, Embry L, et al: Psychological distress and unsatisfied need for psychosocial support in adolescent and young adult cancer patients during the first year following diagnosis. Psychooncology 23:1267-1275, 2014.



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