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Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer
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From page 1...
... In addition, they may have difficulty acquiring health insurance and paying for needed care. Many programs for cancer treatment, survivorship care, and psychosocial support do not focus on the specific needs and risks of AYA cancer patients.
From page 2...
... collaborated with the LIVESTRONG Foundation to convene a workshop, Addressing the Needs of Adolescents and Young Adults with Cancer, on July 15–16, 2013, in Washington, DC.1 The workshop featured discussion panels as well as invited presentations from clinicians, researchers, AYA cancer survivors, and health advocates working to improve the care and outcomes for this population. Participants discussed a variety of topics important to AYA patients with cancer, including • the ways in which cancers affecting AYAs differ from cancers in other age groups and what that implies about the best treatments for AYA cancer patients; • the unique psychosocial needs of AYA cancer patients; • behavioral health and lifestyle management; • fertility preservation; • adequate cancer screening and surveillance for AYA cancer patients; • challenges in acquiring health insurance and paying for appropri ate treatment and survivorship care; • long-term medical and psychosocial needs for AYA cancer survivors; • palliative care; and • end-of-life care needs.
From page 3...
... tend to do better," he said. However, he also presented data showing that AYA patients who received a pediatric treatment regimen for ALL had a 63 percent event-free survival at 7 years versus 34 percent with the adult treatment regimen (Stock et al., 2008)
From page 4...
... 4 NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER BOX 1 Suggestions Made by Individual Workshop Participants Address the care needs of Adolescent and Young Adult (AYA) patients diagnosed with cancer •  rovide a clearinghouse for programs focused on AYA patients P with cancer • mplement care models that promote timely referral, timely initia I tion of treatment, and attention to treatment-protocol adherence •  stablish multidisciplinary care teams with training in the unique E needs and developmental stages of AYA patients • ntegrate information about palliative care into new patient orien I tation packets and programs and incorporate proactive palliative care across the cancer care continuum •  iscuss fertility at the time of diagnosis and have in place an D established referral mechanism for fertility preservation • Design stress-management programs for cancer patients •  esign lifestyle intervention programs to match the developmen D tal stage and interests of AYA patients •  rovide guidance on how to maintain effective access to health P care and insurance, including follow-up cancer care, survivorship care, and routine primary care Improve cancer survivorship care for AYA patients •  evelop new models for transitioning AYAs into survivorship care D and provide tiered care to AYA cancer survivors based on their particular long-term risks and psychosocial needs •  evelop evidence-based guidelines for surveillance of cancer D recurrence and screening for new cancers Bleyer noted that the incidence of melanoma, cervical cancer, and lung cancer has declined among AYAs during the past 10 years, probably due to prevention efforts, including anti-smoking and pro-sunscreen campaigns, restrictions on indoor tanning devices, and use of human papillomavirus (HPV)
From page 5...
... •  se existing data to better understand the patterns of health U care utilization and unique burdens of AYA cancer survivors, particularly in relation to the impact of the ACA •  evelop and leverage online resources to communicate with AYA D patients and to facilitate research • Tailor communications about research for the AYA population cancer and ALL. He said that the increase in colorectal cancer incidence might be due to an increase in HPV-associated rectal cancer combined with an increased likelihood of detection now that colonoscopies are being applied more widely.
From page 6...
... the prevalence of cancer histology by age. The cancers that peak in incidence within each age range are listed in each triangle.
From page 7...
... Melissa Hudson, director of cancer survivorship and division coleader for the cancer prevention and control program at St. Jude Children's Research Hospital, showed that survival improved for those diagnosed with cancer in their 20s in the period 1993–1998 compared to those diagnosed during 1975–1980 (Veal et al., 2010)
From page 8...
... SOURCES: Hayes-Lattin presentation; HHS and LIVESTRONG Young Adult Alliance, 2006. Identifying the Unique Cancer Burden in the AYA Population A number of retrospective analyses have provided evidence for the biological distinctiveness of some of the cancers diagnoses in AYA patients, including osteosarcoma, colorectal cancer, ALL, breast cancer, testicular cancer, and thyroid cancer (Tricoli et al., 2011)
From page 9...
... But Hayes-Lattin noted a lack of available annotated biological specimens from AYA patients that researchers can prospectively link to treatments and patient outcomes. There is also still a need for a large prospective database of AYA cancer patients to facilitate research on this age group.
From page 10...
... There also is still a great need to define outcome measures of highquality care for AYA patients and then study how the various models for AYA care are or are not facilitating those outcomes, he added. Patient Advocacy and Support Both the Alliance for Clinical Trials in Oncology and Critical Mass continue to expand their AYA work and to hold annual meetings aimed at fostering advocacy and support for AYAs with cancer.
From page 11...
... "Many of them have not even experienced a grandparent who has died or Self Health esteem Body behaviors image Peer EmoƟons relaƟons Life DisrupƟons Trust in FerƟlity for AYA health Future Career/ plans educaƟon Family Financial dynamics FIGURE 2 Possible life disruptions for AYA patients with cancer. SOURCE: Fasciano presentation.
From page 12...
... You have moved onto a different path. Your life is different now." Patricia Ganz, Distinguished University Professor at the University of California, Los Angeles, Fielding School of Public Health and the David Geffen School of Medicine, and director of cancer prevention and control research at the Jonsson Comprehensive Cancer Center, stressed that young cancer survivors vary as to what their psychosocial needs are and that it is important to assess this in every patient rather than to treat the patients in cookbook fashion based on age assumptions.
From page 13...
... , survivors were defined as those with a history of cancer diagnosed at ages 15–39 and the majority were longer-term cancer survivors. Other studies focused on individuals who are currently ages 15–39, and were recently diagnosed (including some with poorer prognosis and less likely to become longer-term cancer survivors)
From page 14...
... . A significantly lower proportion of AYA cancer survivors reported being employed for wages, and a significantly higher proportion of AYA cancer survivors reported being out of work, said Eric Tai, medical officer for the Comprehensive Cancer Control Branch at CDC.
From page 15...
... Others reported on what they called "job lock," or the inability of cancer survivors to pursue a career of choice, often because of the need to keep their jobs and not go back to school in order to maintain employee benefits, including health insurance. "Although the data look good in that a large number of cancer survivors are working," Ganz said, "they may not be working up to their potential and may have lost opportunities because of their cancer." Yabroff concurred, adding, "It's really important to not just think about whether they are currently employed but whether they would have had the same career trajectory if they hadn't had cancer." Psychological Challenges The open-ended comments section of the AYA HOPE Study revealed a number of psychological stresses experienced by AYAs with cancer, including a fear of recurrence, concerns about managing their own distress and emotions as well as those of their parents and friends, and feeling burdened by the emotional responses of friends and family members when they told them they had cancer.
From page 16...
... '" Late and Long-Term Side Effects of Treatment Studies show that, because of their cancer treatments, many AYA cancer survivors are more likely to develop various chronic health problems than their peers without cancer. Many of these health problems develop
From page 17...
... This study found that almost half of childhood cancer survivors experience a serious or life-threatening condition or death between 5 and 30 years after diagnosis and that almost three-quarters develop at least one chronic condition (Oeffinger et al., 2006)
From page 18...
... 18 NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER TABLE 1 Potential Late Effects of Cancer Treatment, by System and Exposure System Exposures Potential Late Effects Cardiovascular Radiation therapy Myocardial infarction or stroke Anthracyclines Congestive heart failure Platinums Valvular disease Hypertension Pulmonary Radiation therapy Restrictive lung disease Bleomycin Pulmonary fibrosis Carmustine/Lomustine Exercise intolerance Renal/urological Radiation therapy Renal insufficiency or failure Platinums Hemorrhagic cystitis Ifosfamide/Cyclophosphamide Endocrine Radiation therapy Obesity Alkylating agents Infertility and gonadal dysfunction Dyslipidemia Insulin resistance and diabetes Central nervous Radiation therapy Learning disabilities system Intrathecal chemotherapy Cognitive dysfunction Psychosocial Cancer diagnosis Affective disorders (anxiety, depression) Posttraumatic stress Sexual dysfunction Relationship problems Employment and educational problems Insurance discrimination Adaptation and problem solving Second Radiation therapy Solid tumors malignancies Alkylating agents Leukemia Epipodophyllotoxins Lymphoma SOURCE: Adapted from Oeffinger presentation.
From page 19...
... Unfortunately, there are few data regarding these late effects among survivors of AYA cancer. Cancer survivors are also at risk for secondary malignancies (see Table 1)
From page 20...
... Jennifer Levine, assistant professor of clinical pediatrics and director of the Center for Survivor Wellness in the Division of Pediatric Oncology at Columbia University Medical Center, said that the American Society of Clinical Oncology (ASCO) , the American Society of Reproductive Medicine, and the National Comprehensive Cancer Network have all developed guidelines that state that fertility preservation should be an integral part of cancer treatment for AYAs.
From page 21...
... Male Fertility Levine provided some background information on the biology of fertility and then outlined the causes of infertility in cancer patients. In males, the germ cells start maturing into sperm cells at puberty, and in a healthy male, who is generally fertile from puberty until time of death, they continuously self-renew.
From page 22...
... Fertile Hope's Sharing Hope Program8 enables cancer patients to get discounted rates for sperm banking, Levine said. However, some patients may be too sick or too young to bank sperm at the time of diagnosis, and some may decline due to religious beliefs, she said.
From page 23...
... And cancer treatments, including treatments that affect the pituitary, can cause infertility by disrupting normal hormonal regulation. Unlike men, women are born with all the eggs they will ever have, and there is no self-renewal of germ cells.
From page 24...
... Once a woman has completed her cancer treatment, she can pursue natural, assisted, or surrogate reproduction, although the possibility of a cancer relapse occurring during the pregnancy must be taken into account, as the pregnancy will limit the treatment options and timing. It is also possible that various late effects of treatment, such as cardiovascular or pulmonary impairments, could affect a pregnancy; these, too, must be taken into account.
From page 25...
... In addition, the California legislature recently introduced a bill to require insurance companies to cover fertility preservation. "If coverage can be obtained, this is going to make a tremendous difference for cancer survivors," she said.
From page 26...
... "All these factors present to us unique biologic differences that may affect outcomes that should be considered in the evaluation of these patients," she said. Pediatric or Adult Care Depending on age and specific diagnosis, AYA patients with cancer may be treated at either a pediatric cancer center or an adult cancer center, but often, these patients do not clearly fit into either treatment setting.
From page 27...
... Cancer Survivorship and Transition Program at Children's Hospital Los Angeles (CHLA) and professor of clinical pediatrics in the Keck School of Medicine at the University of Southern California, explained that the transition from pediatric to adult care is especially critical for AYA cancer survivors because not only do they need to have more developmentally appropriate care, but they also need extensive follow-up and cancer surveillance by a physician who is aware of the likely chronic conditions and other late effects they are likely to develop from treatment and the risk-based monitoring they need to have.
From page 28...
... Parents of adolescent cancer survivors tend to be overprotective and are used to navigating their children's health care. These family caregivers may also be hesitant to have their children switch to new providers with whom they do not have a prior relationship.
From page 29...
... On the health care system level, there are a variety of impediments to effective care transitions. Cancer patients often lose health insurance coverage, for example, which is a major impediment to follow-up care.
From page 30...
... : Clinic (Annual Annual follow-up in Evaluation with LIFE Clinic for Adult LIFE Support) Survivors • Any radiation therapy • High alkylators or anthracyclines • Bone marrow transplant 21 years old and Within 2 years off treatment "transition-ready" Time FIGURE 4 LIFE Cancer Survivorship and Transition Program at Children's Hospital Los Angeles.
From page 31...
... "We need to be cognizant of these family members that are supporting AYA cancer patients." Communications with AYA Patients Jacqueline Casillas, director of the University of California, Los Angelese (UCLA) Pediatric Cancer Survivorship Program, Medical Director the UCLA Daltrey/Towshend Teen and Young Adult Oncology Program, and associate professor of pediatric hematology and oncology, spoke about the various factors that health care professionals need to be cognizant of when communicating with AYA patients.
From page 32...
... One study that she conducted found that having a written survivorship care plan was associated with AYA cancer survivors being more likely to report that they could actively manage their survivorship care. "Having such a care plan somehow prepares
From page 33...
... "Survivors often say that it is exhausting to have to tell their story over and over again," she said. Her study also found that ethnic minorities were more likely to report a lack of confidence in managing their survivorship care, and she stressed the importance of addressing language barriers and low levels of literacy among cancer survivors and their families.
From page 34...
... Forty-one percent reported an unmet need for counseling, and 39 percent reported unmet practical support needs such as assistance with health insurance, transportation, and child care. Zebrack noted that a 2010 National Health Interview Survey of 1,177 survivors of adult-onset cancer found that 90 percent reported the reason they were not getting their psychosocial care needs met was because they did not know what services were available to provide them (Forsythe et al., 2013)
From page 35...
... If I had been offered the opportunity to hang out with other cancer survivors at a Redskins game or the movies, I think I would have done it." AYAs with cancer also need information on health insurance and other financial support mechanisms. The CCSS found that many insured survivors had difficulty both obtaining health insurance and using it.
From page 36...
... , etc., and somebody will see a little something on the CT or MRI and say we need to follow that up when it is really nothing," she said. Data on the value of imaging tests for breast cancer recurrence is also sparse, Ganz said.
From page 37...
... Because of a high rate of false-positives, breast MRI screening is recommended only in very high-risk women, such as those with BRCA1/2 mutations. Ganz stressed the need to encourage adherence to mammography surveillance, which has not been adequate in breast cancer survivors.
From page 38...
... "Get to know your geneticist and other people who are working on these genetic susceptibility syndromes." She added that risk-reducing surgery and intensive surveillance for most of these predisposition syndromes are well established and are recommended in guidelines. As had been noted earlier, AYA cancer survivors are also at greater risk for developing secondary cancers because of the cancer treatments they received.
From page 39...
... Ganz also called for providing counseling for AYA cancer survivors who are at a particularly high risk of recurrence or of developing secondary cancers and for more collaboration with primary care providers. Freyer stressed the importance of collaborating with primary care providers to address what he called the "follow-up gap" in AYA cancer survivors.
From page 40...
... . "Although this is not that different from the general population," Fuemeller said, "it's still not good, given the risk factors that may occur later on for these patient populations." Physical Activity Fuemeller said that there is some evidence to suggest that AYA cancer survivors have lower levels of physical activity and greater sedentary activity than their healthy peers; this could be due to impairments in physical functioning that affect their ability to exercise.
From page 41...
... "There's some really good evidence that physical activity not only improves quality of life but quantity of life in cancer patients." Lifestyle Intervention Programs Fuemeller noted that lifestyle intervention programs for cancer survivors tend to have high attrition rates and that cancer survivors tend to prefer distance-based delivery channels, such as the Internet, over in-person sessions. In one pilot study of an Internet-based physical activity program for young adult cancer survivors, participants in the intervention group reported maintaining a level of activity that was as great as or greater than the level of activity reported by those in a control group, and the program was considered highly acceptable by the participants.
From page 42...
... "We started a stress reduction intervention because they were telling us they are exercising and eating well but they needed someone to help them manage their stress," she said. She also noted that, despite the special needs of AYA cancer survivors, the programs that can help them will have to be aimed at a more general population of cancer patients "because we're never going to have all these specialized programs to meet everyone's needs." Substance Abuse Karen Emmons, professor in the Department of Society, Human Development, and Health at the Harvard School of Public Health and deputy director of the Center for Community Based Research at the Dana-Farber Cancer Institute, reported that AYA cancer patients are at an increased risk of substance abuse.
From page 43...
... Most studies show that childhood cancer survivors smoke at a rate that is equal to or lower than the rates of smoking among their siblings or the general population, although the Behavioral Risk Factor Survey found a twofold increase in smoking among survivors. Emmons stressed that even if survivors smoke just as much but no more than their peers, "it's a real problem for their health, especially in the context of all the late effects they are likely to develop," she said.
From page 44...
... "It is theorized that in the general population people engage in substance use to cope with life stressors, and data suggest that poor daily coping has been reported among childhood cancer survivors and that worry is linked to substance use. So, helping address some of these life stressors may help with reducing substance use," Emmons said.
From page 45...
... Studies are beginning to document the benefits of palliative care. One study found that adding palliative care to standard care for metastatic lung cancer patients resulted in better quality of life, less anxiety and depression, the use of fewer hospital resources and chemotherapy, and longer life compared to standard care alone (Temel et al., 2010)
From page 46...
... "This patient population does not deal well with transitions from provider to provider," he said, "so different care teams Oncology Service Standard OperaƟng Procedures Implemented by a Pallia�ve Care–Trained Team Member Diagnosis Disease EvaluaƟon Crises Relapse End-of-Life Bereavement • Advance Care Planning • Advance Care Planning • EducaƟon About Pallia�ve Care • Symptom Control • Rou�ne Distress Assessment • EmoƟonal, Social, Spiritual Care • Care CoordinaƟon • Advance Care Planning • Care ConƟnuity • Symptom Control • EmoƟonal, Social, Spiritual Care • Advance Care Planning Follow-Up Care for Family • Care CoordinaƟon • Symptom Control Members and Caregivers • EmoƟonal, Social, • Risk Assessment Spiritual Care • Care Planning • Care CoordinaƟon FIGURE 5 Embedded expert model of palliative care integration across the care continuum. SOURCE: Baker presentation.
From page 47...
... He added that a flexible, multidisciplinary palliative care team with extra training in the needs of the AYA patient could provide support within both pediatric and the adult facilities as well as support for home care. Advance Care Planning Baker stressed that advance care planning is a critical part of cancer care.
From page 48...
... Jude found that nearly one-quarter of those cancer patients between 15 and 21 had lost a close friend in the previous year, with most of the friends who died being other oncology patients. "This grief experience can increase their death anxiety," Baker said.
From page 49...
... Another wrote about how the death of a fellow AYA with cancer provoked his own anxiety, especially given that the peer had died despite doctors reassuring him that he was going to be fine. One respondent wrote, "Sometimes his mother posted really depressing things about her grief on Facebook." As Baker stressed, "These are things that our adolescent and young adult patients are dealing with on a day-today basis and that we have to be addressing proactively." Karen Fasciano noted that AYA patients who are approaching death have unique psychological issues, not shared by older adults, concerning how to come to terms with the meaning of their shortened lives and what their legacy will be in addition to the grief tied to dying young.
From page 50...
... Eleven percent were uninsured, which is similar to the approximately 15 percent uninsured rate in the general population. But, as Park noted, these cancer survivors need so much medical care that "it is a huge problem to address." She described one study that found that nearly three-quarters of uninsured AYA cancer survivors had had no routine medical visits during the previous year and had had to forego medical care
From page 51...
... Robin Yabroff reported that a study using the nationally representative MEPS data showed a mean annual medical expenditure for survivors of AYA cancers of about $8,300, which is about double that for similar individuals without a cancer history. Kevin Oeffinger pointed out that many of those medical expenditures go toward treating the multiple conditions that AYA cancer survivors are likely to develop due to their cancer treatment.
From page 52...
... . Similar patterns of access to care for cancer survivors and individuals without a cancer history by type of health insurance were observed for other preventive services (Yabroff et al., 2013)
From page 53...
... But she stressed that AYA patients will need both advocacy and education to help them use these health care reform benefits. Her study found that more than half of childhood cancer survivors did not even know whether to feel concerned or hopeful about the benefits and protections under the ACA (Park et al., 2012)
From page 54...
... Ganz suggested that providing spiritual resources as part of care for AYAs with cancer might also be of benefit, given that studies indicate that they can help boost the psychological resiliency of cancer patients. Participants noted examples of programs for AYA patients with cancer throughout the workshop (see Box 3)
From page 55...
... Education Needs for Health care Professionals Several workshop participants identified a lack of education for health care professionals on the special needs of AYA patients with cancer as a gap that needs to be closed, through AYA-focused specialty training programs or fellowships in oncology or hematology, support tools, or other initiatives.
From page 56...
... Life with Cancer Young Adult Program Offered by Inova Cancer Services, the Life with Cancer Young Adult Programb targets cancer patients between the ages of 18 and 39 by offering group meetings co-facilitated by an oncology social worker and an oncology nurse educator. These meetings address such issues as fertility, isolation, insurance, dating and sexuality, financial assistance, education, employment, and age-appropriate peer support, including social networking.
From page 57...
... Teen Cancer America Teen Cancer Americae has a number of activities aimed at improving the care of teens and young adults with cancer, including • Partnering with hospitals to create youth-oriented centers  that provide peer support and interaction for those receiving treatment • Funding analysis and documentation of U.S. best practices in the  treatment of teens and young adults with cancer • Developing, circulating, and administering ongoing training for  doctors and other personnel who work with teens and young adults with cancer to help them deal with their unique needs • Developing materials and programming to help students, teach  ers, administrators, educators, and employers understand how they can best support teens and young adults with cancer when they return to school and work Change It Back The Health Care Rights Initiative sponsors the Change It Backf Centers of Excellence Program, which is dedicated to facilitating the d  See http://www.chla.org/site/c.ipINKTOAJsG/b.3768089/#.UmGbRhb Cmio (accessed October 24, 2013)
From page 58...
... He noted that CHLA requires fellows in pediatric hematology and oncology at the University of Southern California to have a rotation in cancer survivorship care in their second and third years. He also noted the availability of Webbased support tools for primary care providers, such as the Passport for Care14 developed by COG, and he suggested that there should be greater development and use of clinical guidelines and continuing medical education programs that focus on the AYA cancer patient.
From page 59...
... Hudson reported that SEER data from patients diagnosed in 2006 indicate that only 14 percent of cancer patients aged 15 to 39 were enrolled in clinical trials (Parsons et al., 2011) , compared to about 60 percent of pediatric cancer patients.
From page 60...
... MEPS and the MEPS Experiences with Cancer survey, for example, were offered in English and Spanish, and the California Health Interview Survey was administered in six languages. In addition to being administered in appropriate languages, surveys must be sensitive to the needs of the community being studied, another participant suggested.
From page 61...
... Sharon Murphy, scholar in residence at the IOM, suggested establishing an online platform akin to PatientsLikeMe15 for gathering information about AYAs with cancer, including what treatments they have had, how they responded, the toxic effects they experienced, and so on. This continually 15 See http://www.patientslikeme.com (accessed October 8, 2013)
From page 62...
... But we recognize there is important work happening in different institutions and are working to make sure we are in line about those things." Nita Seibel, head of pediatric solid tumors in the Clinical Investigations Branch of the Cancer Treatment and Evaluation Program at the NCI, added that public–private collaborations are especially important in the current era in which government funds are often not sufficient.
From page 63...
... Kean reiterated the need to incorporate palliative care across the cancer care continuum. He also reviewed the challenges in survivorship care, including transitions to new care providers and care settings, surveillance for recurrences, screening for secondary cancers, and managing the risk of late effects of treatment.
From page 64...
... Kean also stressed the idea of giving back. AYA cancer survivors at the workshop said that patients who have had a positive experience with their care are more likely to be willing to give back and participate in research.


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