Adolescent and Young Adult Patients Report Unmet Needs for Cancer Information and Psychosocial Support Services


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Teens and young adults [with cancer] benefit from a more family-oriented approach.

—Bradley Zebrack, PhD, MSW, MPH

In the News focuses on media reports that your patients may have questions about at their next visit. This continuing column will provide summaries of articles in the popular press that may prompt such questions, as well as comments from colleagues in the field.

Psychosocial care needs are not being met in substantial proportions of adolescents and young adults (AYAs) with cancer, according to a study among patients aged 14 to 39 years at the time of diagnosis with invasive cancer. The study was published in the journal Cancer1 and reported in the health and consumer media.

Within 4 months of diagnosis, 215 patients were assessed for whether they wanted to use and had used cancer information resources, emotional support services, and practical support services, such as infertility treatment, complementary and alternative health care, and help with understanding health insurance. The percentages of patients with unmet needs varied according to the specific need and age subset.

Among those reporting unmet needs for cancer information, the percentages ranged from 10.3% of those aged 14 to 19, to 28.3% of 20- to 29-year-olds. Reports of unmet needs for mental health counseling ranged from 13.4% of 14- to 19-year-olds, to 38.5% of 30- to 39-year-olds. Those aged 20 to 29 had the highest percentage of unmet needs for fertility services, 30.4%, compared to 14.4% for younger and 13.8% for older adolescent and young adult patients.

Treated in Adult and Pediatric Settings

The most commonly diagnosed cancers among the study participants were leukemia (48 patients, 23.1%), bone tumors (24 patients, 11.5%), Hodgkin disease (23 patients, 11.1%), and soft-tissue sarcoma (21 patients, 10.1%). Compared to patients with cancer in the U.S. population, patients diagnosed with cancers that had relatively low survival rates were overrepresented in the study—81.7% had cancers with 40% to 75% 5-year survival rates. The study’s lead author, Bradley Zebrack, PhD, MSW, MPH, Associate Professor of Social Work at the University of Michigan, Ann Arbor, said that finding could be attributed to patients being recruited only from tertiary care hospitals, the three participating pediatric care institutions and the two participating university-affiliated adult care medical institutions.

Findings suggested that wanting or using a service varied “depending on sociodemographic characteristics and clinical conditions, but rarely according to the type or severity of cancer,” the study report noted.  “I find that really fascinating,” Dr. Zebrack said in an interview with The ASCO Post. “It doesn’t matter if the doctor says, ‘You have Hodgkin disease, but we are going to cure this; you have a 90% to 95% chance of survival.’ That patient is just as likely to report the need for supportive care services as the patient who has been told, ‘You’ve got a really nasty cancer; you have less than a 50% chance of survival.’ The assumption had been that if we can cure you, you have no reason to need support services, like counseling from a mental health professional, but in fact that is not the case.”

Adolescents and young adults treated in adult facilities were more likely to report unmet needs for mental health and some other services. “Some people characterize the difference between the pediatric hospitals and the adult hospitals in this way: The pediatric settings are family-centered, whereas the adult settings—whether an adult care hospital or even a small group oncology practice that sees mostly adults—are disease-focused,” Dr. Zebrack explained. “Teens and young adults benefit from a more family-oriented approach.”

Nutrition and Diet

Nearly half of the adolescents and young adults in the study indicated unmet needs for information and counseling specific to diet and exercise, and those who had received chemotherapy were more likely to use exercise, diet, and nutrition information. This “suggests that chemotherapy likely disrupts AYAs’ routine fitness and/or dietary regimens, thus making them more desiring of and amenable to recommendations related to how they can incorporate exercise and healthful eating into their lives to the extent possible,” according to the study report.

“I think the message to providers is that chemotherapy increases this potential for life disruption,” Dr. Zebrack said. “A lot of young people are naturally involved in sports and fitness and attending to diet.” They may just be learning how to live on their own and care for themselves, including preparing healthy meals and eating well, Dr. Zebrack pointed out. Now they have to learn to do all these things while feeling sick from chemotherapy. 

Physical activity may not only minimize treatment-related side effects, but it can also promote social involvement and reduce isolation. “If you can get yourself involved in physical activity or physical fitness programs, it puts you into contact with people,” Dr. Zebrack said. “That’s really what these young people need, because they get so isolated.”

More Unmet Needs Among Those in Their 20s

“AYAs aged 20 to 29 were significantly less likely than teens and older patients ages 30 to 39 to report using professional mental health services and were significantly more likely to report an unmet need with regard to cancer information, infertility information, and diet/nutrition information,” the report noted. Is there something about the 20- to 29-year-olds that makes them more reluctant to seek help?

“I think they are still at that stage of life when they are hesitant to trust authority figures,” Dr. Zebrack said. In addition, some of these young people who had been reporting pains or other symptoms prior to their cancer diagnosis were told not to worry. While it is understandable from the physician’s point of view that not every pain should be considered an indication of cancer, Dr. Zebrack said, for the young people who are later diagnosed with cancer, “their natural reluctance to turn to authority figures is now reinforced—from their point of view—by having been misinformed over time. They are now even more mistrusting of doctors and authority figures.”

Conflict with Independence

These 20-somethings are also in the natural phase of their development when they are trying to become independent. “Turning to adults is indicative of regressing, having to become dependent on their parents again, when they really want to go out and live life on their own,” Dr. Zebrack explained.

“Some young adults won’t even tell their parents that they have been diagnosed with cancer, because they want to do it on their own. So what happens? They are reluctant to see the psychologist, because that is the authority figure. They are not getting support from their friends, because their friends don’t understand what it is like to be 25 years old and have cancer. So they are reporting unmet needs, because they are not getting what they need from those whom they elect to be around,” he added.

“I can understand a lot of these comments through my own experience,” said Dr. Zebrack, who at age 26 was diagnosed with Hodgkin lymphoma. “My family was very supportive, but I was living alone in San Francisco and had to move back into my parents’ house, into my old bedroom.”

The 20- to 29-year-olds were also more likely to report an unmet need for complementary and alternative medical services. Part of the willingness to use complementary and alternative services is the thinking, “I am going to be open to anything that seems helpful,” but that thinking is a “double-edge sword,” Dr. Zebrack said. “Sure, many complementary and alternative therapies can be beneficial, but there is a lot of stuff out there that is like snake oil. Preparing these patients to be able to critically evaluate what is available and to go to reputable sources for that kind of support is important,” he added.

Is the Internet Overvalued?

“The relatively low use of age-appropriate, Internet-based resources among teenagers in the current study (15.5%) suggests that, although teens may be heavy users of computers and social media in general, perhaps only a minority of these recently diagnosed patients use the Internet for cancer-related information and support,” according to the study report.

“It’s a curious finding because we are all assuming that young people are turning to the Internet for information and support,” Dr. Zebrack said. “Have we been overestimating the value of the Internet?”

The study report also notes that “cancer information can exacerbate anxiety and distress, particularly for young people.” Counseling teens on accessing and properly interpreting Internet information about cancer “is a need that has not been well addressed yet,” according to Dr. Zebrack.

“Some people need all the information right upfront,” he stated. From the providers’ standpoint, we need to ask on a case-by-case basis in our communication with these young adult patients, ‘How much information do you want now? Tell me when you want me to stop.’ We need to be really clear in articulating that. Social workers are trained in how to have that conversation and attuned to how to talk with individual patients. They know when the anxiety level is starting to get too high, and they stop and return to that conversation later.”

Impact of NCCN Guidelines 

Dr. Zebrack serves on the National Comprehensive Cancer Network (NCCN) Adolescent and Young Adult Oncology Panel that developed clinical practice guidelines for AYA oncology.2 The guidelines address the critical issues that adolescents and young adults with cancer (and their caregivers) encounter at diagnosis, during treatment, and after therapy, including psychosocial issues.

Issued earlier this year, the guidelines are still too new to have had a significant impact, Dr. Zebrack said. “The big impact is going to come from the next effort, which is to package the guidelines for patients and families. Putting this information into the hands of patients and families is going to give them the armamentarium to go to their doctors and say, ‘You know you haven’t asked me about infertility yet,’ or to ask ‘Do you have experience treating other young adults with cancer? Are you going to give me a treatment used in older adults, or are you giving me a treatment intended for pediatric patients, because I am looking at the research that says I am better served by the pediatric protocol,’” Dr. Zebrack explained. “People really need to be armed with as much information as possible, because our health-care system is overburdened.”

Dr. Zebrack said that the committee already has a draft of the patient and family information and expects that it will be available “in the next year or so.” ■

Disclosure: Dr. Zebrack and his coauthors on the Cancer article reported no potential conflicts of interest.

References

1. Zebrack BJ, Block R, Hayes-Lattin B, et al: Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients. Cancer June 28, 2012 (early release online).

2. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines): Adolescent and Young Adult (AYA) Oncology. Version 1.2012. Available at www.nccn.org/professionals/physician_gls/pdf/aya.pdf. Accessed August 7, 2012.


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