Developing an evidence-based survivorship navigation program involves a fair amount of trial and error, according to JaLisa Boyd, RN, BSN, MS, and Katie Navarte, LMSW, who make up a nurse/social [ Read More ]
January 2017 VOL 8, NO 1
Navigating Adolescents and Young Adults with Cancer
Adolescents and young adults (AYAs) with cancer face a unique set of needs and challenges, but at the end of the day, they just want to be taken seriously and treated like adults, according to Paula Sanborn, RN, BSN, CPHON, CPN, Sarcoma Nurse Navigator at Nationwide Children’s Hospital in Columbus, OH.
The incidence of cancer in the AYA population (aged 15-39 years) has steadily increased over the past 25 years. Globally, 1 million new cases of cancer occur annually in AYAs, and overall survival in these patients has not improved, especially compared with pediatric cancer patients who have a greater than 80% 5-year overall survival rate, she reported. Although the AYA population spans a fairly large age range, she said the 2 questions she hears most often from her patients are, “Am I going to die?” and “Will this affect my fertility?,” so there’s more commonality in this age-group than people realize.
“Treating the AYA cancer population is about having patience and understanding,” she said at the Academy of Oncology Nurse & Patient Navigators 7th Annual Navigation & Survivorship Conference. “More than anything it’s about honesty, integrity, and getting to know them so they learn to trust you.”
In 2005, an “AYA Oncology Progress Review Group” meeting sponsored by the National Cancer Institute and the Lance Armstrong Foundation resulted in a consensus of key recommendations for improving the outcomes of AYAs with cancer. From this meeting, Critical Mass: The Young Adult Cancer Alliance, formerly known as the LIVESTRONG Young Adult Alliance, was formed. The organization focuses on research, understanding disparities in access to care, healthcare delivery, and health outcomes in the AYA cancer population. Additionally, the National Comprehensive Cancer Network recently released provider and patient guidelines for AYA oncology.
But according to Ms Sanborn, certain factors still limit progress in the AYA cancer population. They struggle with limited insurance coverage, although the Affordable Care Act has helped because individuals in this age-group can stay on their parents’ coverage longer, she noted. Delayed diagnosis is a barrier to progress, because it’s so often presumed that this patient population is healthy. And when a patient’s diagnosis is delayed, it can lead to issues with trust in the healthcare system later on.
Clinical trial enrollment is low in this understudied population, and not enough emphasis is placed on prevention and early detection (ie, education on how to perform skin and breast self-checks.) Treatment settings are not always ideal, and patients might have to receive care at a treatment center that doesn’t specialize in their malignancy. She advised that AYAs should be treated in pediatric healthcare settings for acute lymphocytic leukemia, acute myeloid leukemia, rhabdomyosarcoma, and Ewing’s sarcoma, and in adult healthcare settings for breast, colon, and thyroid cancers and melanoma.
The capture of patient data in AYAs is subpar, and patients’ tumors should be studied more often, she noted. Psychosocial and supportive care is lacking as well. “It’s a time of independence and autonomy for these patients, and a cancer diagnosis is particularly difficult in this age group,” she said. Additionally, more education is needed for physicians and nurses treating AYAs with cancer, as well as for the patients themselves.
Developmental Tasks and Challenges
AYAs are establishing their sense of self-identity, and they often want to talk about intimacy and sex, said Ms Sanborn. “Talk to them about safe sex and be upfront,” she advised. “I have 17- and 18-year-olds asking me all the time if their treatment is going to affect their fertility. It’s important to them, and if it’s important to them we should be talking about it.” She said they’re working on a fertility program at Nationwide Children’s Hospital in collaboration with the Oncofertility Consortium. The program mandates that every person, regardless of age, be told during a discussion on consent that they might face fertility issues due to their cancer treatment.
The uncertainty of a cancer diagnosis can hinder AYAs from making future plans for education and employment. Ms Sanborn encourages her patients to take a course online during their treatment to keep their minds busy. “I tell them, ‘if you fail it, you fail it, but I’ll write a letter to admissions next year and tell them you need another opportunity,’” she said. She urges caretakers to remember what’s important to young people with cancer to uphold their quality of life. For example, most of her sarcoma patients don’t stay inpatient for treatment. “They wear their chemotherapy in a backpack and go to school every day,” she said. “If a kid wants to go to college, ask yourself, ‘how can I make that happen?’”
Social and family support can go either way, she cautioned. It’s important to understand and respect what the patient wants, and that could mean limiting parental access to information, even to the dismay of some “helicopter parents.” Peer relationships can be a challenge for these patients as well. “I sometimes hear my patients say that the people they thought would be there for them disappeared,” she said.
She emphasized the importance of sensitivity to the physical changes AYAs go through during treatment that can negatively impact their body image and self-esteem. “This is huge for this group, and I think we need a lot more studies on this,” she noted.
She said AYAs with cancer don’t want to sit around eating junk food all day. Their health is important to them; they want nutrition classes and exercise guidance. They seek involvement in rehabilitation, integrative medicine, and palliative care, and they want information on fertility preservation and genetic counseling. She recommends a resource called Enrich, which offers free, online reproductive cancer health training for nurses.
The Nationwide Children’s Hospital AYA program hosts quarterly events like cooking classes, holiday parties, movie and dinner night out, and snow tubing. At the events they discuss a variety of topics such as fertility, relationships, and college after cancer. Speaking with other AYAs and survivors is therapeutic for this population, and that’s the impetus for the program, she said. Getting out and meeting people at these events is also an antidote to their boredom and feelings of isolation, a major psychosocial challenge for them. She encourages her patients to bring a friend to these events, but no parents, because she wants them to speak freely. “That gets them there,” she added. “Privacy is huge for these patients, but it’s vital to connect them with somebody else who understands.”
She warned that social media can help or hurt these patients, but she advocates the use of apps like “ip” (instapeer) that can connect them with someone to talk to in the middle of the night, or the AYA Healthy Survivorship app, which gives them daily reminders. She also recommends Voicing My Choices, a planning guide for AYAs at the end of life that gives them the autonomy of making their own decisions.
Low participation rates in survivorship care are seen among AYAs. The Childhood Cancer Survivor Study reports that only 19.2% of survivors aged 18 to 48 years had visited a cancer center in the preceding 2 years, and less than half (41.9%) had a cancer-related visit.
AYA survivors are a difficult population to fit into a “one size fits all” survivorship care model, and AYA visits can be time consuming, as it takes time to establish rapport and build trust. “But successful survivorship care for the AYA is less about the model of care and more about the education, expertise, and empathy of the providers,” she said, and resources are plentiful if you know where to look.
AYA survivors face significant physical and emotional challenges after their treatment, some with lifelong implications. Many experience posttraumatic stress disorder, anxiety, depression, and fear of recurrence, and more than half of AYAs who need mental health services don’t receive them, she noted. In other words, some of these lifelong emotional struggles could be avoided.
To make progress in AYA cancer care, Ms Sanborn advocates purpose-driven clinical services that navigate the AYA to the “best” care for their disease, close collaboration between pediatric and adult oncology, and access and accrual to therapeutic clinical trials. “That 18-year-old Ewing’s sarcoma patient at a small tertiary hospital should be navigated to a pediatric facility that has open clinical trials,” she said.
She wants to push for a discrete AYA oncology discipline with related training programs and certification, with a broad coalition of stakeholders. “And the AYA nurse navigator should be right in the middle,” she said, “getting those patients where they need to go.”