Identifying and Addressing the
Needs of Adolescents and
Young Adults with Cancer

A LIVESTRONG and Institute of Medicine Workshop



INTRODUCTION

Cancer is the leading disease-related cause of death in adolescents and young adults (AYAs). Each year almost 70,000 AYAs between the ages of 15 and 39 are diagnosed with cancer, approximately eight times more than children under age 15. This population faces many short- and long-term health and psychosocial issues, such as difficulty reentering school, the workforce, or the dating scene; problems with infertility; cardiac, pulmonary, or other treatment repercussions; and secondary malignancies. Survivors of AYA cancers are also at increased risk for psychiatric conditions such as anxiety, depression, substance abuse, and suicide. 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. Recognizing this health disparity, in 2006 the National Cancer Institute (NCI) appointed a progress review group (PRG) to produce a report outlining recommendations for improving the care and outcomes for adolescents and young adults with cancer (HHS and LIVESTRONG Young Adult Alliance, 2006). A plan outlining strategies for implementation of these recommendations was developed in 2007 (LIVESTRONG Young Adult Alliance, 2007). Since that time, progress has been made in bringing attention to the special needs of AYAs with cancer. However, many challenges remain in providing optimal care for this population.



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement



Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.

OCR for page 1
Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer A LIVESTRONG and Institute of Medicine Workshop INTRODUCTION Cancer is the leading disease-related cause of death in adolescents and young adults (AYAs). Each year almost 70,000 AYAs between the ages of 15 and 39 are diagnosed with cancer, approximately eight times more than children under age 15. This population faces many short- and long-term health and psychosocial issues, such as difficulty reentering school, the workforce, or the dating scene; problems with infertility; cardiac, pulmo- nary, or other treatment repercussions; and secondary malignancies. Sur- vivors of AYA cancers are also at increased risk for psychiatric conditions such as anxiety, depression, substance abuse, and suicide. In addition, they may have difficulty acquiring health insurance and paying for needed care. Many programs for cancer treatment, survivorship care, and psycho- social support do not focus on the specific needs and risks of AYA cancer patients. Recognizing this health disparity, in 2006 the National Cancer Institute (NCI) appointed a progress review group (PRG) to produce a report outlining recommendations for improving the care and outcomes for adolescents and young adults with cancer (HHS and LIVESTRONG Young Adult Alliance, 2006). A plan outlining strategies for implementa- tion of these recommendations was developed in 2007 (LIVESTRONG Young Adult Alliance, 2007). Since that time, progress has been made in bringing attention to the special needs of AYAs with cancer. However, many challenges remain in providing optimal care for this population. 1

OCR for page 1
2 NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER To facilitate discussion about gaps and challenges in caring for AYA cancer patients and potential strategies and actions to improve the quality of their care, the Institute of Medicine’s (IOM’s) National Cancer Policy Forum (NCPF) collaborated with the LIVESTRONG Foundation to con- vene 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. Participants also discussed research gaps and the challenges to devel- oping an evidence base to guide the care of AYAs with cancer. Because of the dearth of data on the AYA population, a number of speakers presented data from studies of childhood cancer survivors who have since entered the AYA age range. Although it may be reasonable to extrapolate some findings from that data to patients diagnosed as AYAs, caution is needed in drawing 1 This workshop was organized by an independent planning committee whose role was limited to the identification of topics and speakers. This workshop summary was prepared by the rapporteurs as a factual summary of the presentations and discussions that took place at the workshop. Statements, recommendations, and opinions expressed are those of individual presenters and participants; are not necessarily endorsed or verified by the Institute of Medi- cine, the National Cancer Policy Forum, or the LIVESTRONG Foundation; and should not be construed as reflecting any group consensus.

OCR for page 1
NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER 3 conclusions for the AYA population. Workshop participants also suggested policy strategies that could be pursued to improve the care of and outcomes for this population. This report is a summary of the workshop. A summary of suggestions from individual participants is provided in Box 1. The workshop agenda and statement of task can be found in the Appendix. The speakers’ biog- raphies and presentations (as PDF and audio files) have been archived at http://www.iom.edu/Activities/Disease/NCPF/2013-JUL-15.aspx. AYA Cancer biology and trends Adolescents and young adults are more susceptible to certain types of cancers, including leukemia, lymphoma, melanoma, and cancers of the cen- tral nervous system, germ cells, connective tissue, and thyroid. This group of cancers differs from the cancers that commonly afflict children or older adults. Consequently, “pediatric oncologists and adult-treating physicians and medical oncologists are not as familiar with this group of cancers as they are with the other cancers that affect their patients,” said Archie Bleyer, clinical research professor at the Knight Cancer Institute of the Oregon Health & Science University (OHSU) (see Figure 1). Brandon Hayes- Lattin, associate professor of medicine, hematology, and medical oncology and the medical director of the Adolescent and Young Adult Oncology Pro- gram at OHSU Knight Cancer Institute, said that AYAs are also more likely to be diagnosed with different subtypes of cancers than other groups, which affects what treatments are most likely to be effective for them. For example, one study found that AYAs are more likely to be diagnosed with melanomas that have BRAF2 mutations and thus are more likely to respond to BRAF inhibitor drugs (Menzies et al., 2012). Similarly, AYAs diagnosed with acute lymphoblastic leukemia (ALL) tend to have genetic defects in their tumors that are associated with better prognosis. “This might explain why younger people, even if given the same therapy [as older adults] 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). He added that a recent meta analysis found that patients under the age of 35 with a matched sibling had significantly better survival with an allogeneic bone marrow transplant (Gupta et al., 2013). 2  Human homolog B of v-raf (rapidly accelerated fibrosarcoma viral oncogene).

OCR for page 1
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) vaccines. Bleyer said that although the incidence of most of the cancers that AYAs are prone to develop has declined or has not increased in the past 10 years, some types of cancer have become more common in this age group, including kidney, thyroid, breast, colorectal, and testicular

OCR for page 1
NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER 5 •  se an exposure-based approach to risk-reduction strategies for U late effects and secondary cancers among AYA cancer survivors • ncrease efforts to identify patients with genetic syndromes that I predispose AYAs to cancer and to implement evidence-based risk-reduction strategies for those patients •  oster more collaboration between oncologists and primary care F providers • Consider fertility preservation post treatment if desired Improve training, education, and research •  rovide more specialty training programs and fellowships and P continuing medical education programs focused on the care of AYA patients and establish standards for training •  ddress research gaps in psychosocial care, late treatment A effects, fertility, lifestyle interventions, access to care, and socio- economic consequences of cancer diagnosis (such as educa- tion, employment, and career) •  easure patient outcomes following psychosocial care to ensure M that care is informed by evidence •  oster more collaboration among various organizations, institu- F tions, and federal agencies •  ducate the AYA population about new options to obtain and E maintain health insurance through the Affordable Care Act (ACA) •  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. He added that although the incidence of both kidney and thyroid can- cer has substantially increased among AYAs, this is likely due to increased detection by ultrasound and other diagnostic imaging. “Both are examples of overdiagnosis in which our diagnostic testing has become so advanced

OCR for page 1
6 NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER a Other 11% Breast cancer 14% Bone sarcoma 1% CNS tumors 4% Leukemia 4% Lymphoma 13% Colorectal cancer 5% TesƟcular cancer 7% Melanoma 10% Kaposi sarcoma 5% Female genital tract cancer 9% SoŌ-Ɵssue sarcoma* 8% Thyroid cancer 9% b figure 1a R02534--Young Adults with Cancer Carcinomas Lung Breast Gastrointestinal Urinary Tract Head/Neck AYA Thyroid Melanoma Connective Tissue Germ Cell - Gonadal Pediatric Brain, Leukemia Lymphoma Embryonal 0 15 30 80 Age (Years) FIGURE 1 (A) Relative frequency of the common types of cancers in adolescents and young adults, aged 15–39, 1992–2002, and (B) the prevalence of cancer histology by age. The cancers that peak in incidence within each age range are listed in each triangle. *Excluding Kaposi sarcoma. figure 1b NOTE: AYA = adolescent and young adult; CNS = with Cancer R02534--Young Adults central nervous system. SOURCES: (A) Bleyer presentation; Bleyer et al. (2008). Reprinted by permission from Macmillan Publishers Ltd: Nature Reviews Cancer (Bleyer et al., 2008), copyright 2008. (B) Hudson presentation; Bleyer et al. (2006).

OCR for page 1
NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER 7 and widely available that we are now detecting indolent lesions of epithelial origin (IDLE) that do not need to be fixed. We are diagnosing more than we need to, and we are subsequently overtreating,” Bleyer said. A new finding of uncertain significance is the proportion of cancer in AYAs that is not considered malignant, such as ductal carcinoma in situ (DCIS) of the breast and low-grade brain tumors (gliomas, craniopharyn- gioma, meningioma). Data from the Surveillance, Epidemiology and End Results (SEER) program indicate that about 15 percent of AYA cancers— one in every six to seven patients—are reported as non-malignant, the highest proportion of all age groups. Some of these non-malignant cancers are nonetheless lethal. “We need to look into this problem,” Bleyer said. Melissa Hudson, director of cancer survivorship and division co- leader 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). Survival decreased during the same time span for those diagnosed in their 30s. More recent trends in cancer incidence, survival, and mortality among AYA patients are currently being assessed. The NCI held a meeting in Sep- tember 2013, to examine current science and research gaps in AYA oncol- ogy. The workshop utilized five working groups that reviewed the available data on the epidemiology (incidence, survival, mortality) of select AYA cancers, as well as evidence related to basic biology, clinical trial enrollment, models of care, and health-related quality of life/symptom management for this population. Progress since the NCI Progress Review Group report and implementation plan The NCI PRG report made recommendations in five broad catego- ries, shown in Box 2. The LIVESTRONG Foundation then convened the LIVESTRONG Young Adult Alliance, which has since evolved into an independent organization called Critical Mass: The Young Adult Cancer Alliance, to implement the report. Hayes-Lattin reported on the progress that has been made since the report came out in 2006.

OCR for page 1
8 NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER BOX 2 NCI Progress Review Group Recommendations 1. Identify the characteristics that distinguish the unique can- cer burden in the AYA oncology patient. 2. Provide education, training, and communication to improve awareness, prevention, access, and high-quality cancer care for AYAs. 3. Create the tools to study the AYA cancer problem. 4.  nsure excellence in service delivery across the cancer E control continuum. 5. Strengthen and promote advocacy and support of the AYA cancer patient. 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). Reports have also docu- mented the unique characteristics of AYAs with cancer, including character- istics related to health-related quality of life (Smith et al., 2013), epidemiol- ogy trends (Johnson et al., 2013), toxicity (Gupta et al., 2012), and AYAs’ experience of psychological distress (Kwak et al., 2013). Education, Training, and Communication Efforts have been made to raise awareness of AYA cancer issues as a first step toward increasing the national focus on and resource allocation to the AYA cancer problem. The LIVESTRONG Young Adult Alliance has provided targeted education to patients, families and caregivers, and the public about AYA cancer issues and fostered the education of multidisci- plinary care providers who work with AYAs in order to improve referrals and services for this population. Professional educational programs focused on AYAs with cancer now include the American Society of Clinical Oncology’s

OCR for page 1
NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER 9 Focus Under Forty3 online curriculum and the nurse oncology education program At the Crossroads.4 In addition, the LIVESTRONG Young Adult Alliance published a position statement on the necessary components for AYA oncology training for health professionals (Hayes-Lattin et al., 2010). There also now is a National Young Adult Cancer Awareness Week and associated media outreach activities. “The field,” Hayes-Lattin said, “really is at a turning point of evolving from the notion of raising awareness as the principal target to formalizing some of those components, whether that would be requirements in educa- tional curricula or certification standards.” Tools The NCI PRG report made a number of recommendations regarding research tool development, including recommendations to create a large prospective database of AYA cancer patients to facilitate research on this age group, to increase the number of annotated patient specimens to sup- port research progress, and to improve grant coding and search term stan- dardization to enable the evaluation of research efforts and progress. Since the report came out, there have been improved search tools in PubMed and other research databases that enable targeting of AYA-specific studies. 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. Much work remains to be done in this arena, Hayes-Lattin stressed, but he did point to progress made in other research-related areas. Efforts have been made to amend clinical trial eligibility requirements relating to age so that more adolescents and young adults with cancer can participate. A treat- ment regimen based on a pediatric protocol was recently applied in a clinical trial setting across multiple adult cooperative trial groups.5 The Alliance for Clinical Trials in Oncology also funded an adolescent and young adult cohort study that showed the feasibility of prospectively following ado- lescents and young adults from the time of their cancer diagnosis. Hayes- 3  See http://university.asco.org/focus-under-forty (accessed October 8, 2013). 4  See http://www.noep.org/nursing-cne/preview/40-at-the-crossroads-cancer-in- ages-15-39 (accessed October 8, 2013). 5  See http://clinicaltrials.gov/show/NCT00558519 (accessed October 8, 2013).

OCR for page 1
10 NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER Lattin also noted the newly created AYA-specific committees that are now a part of the NCI-supported National Clinical Trials Network. He called on the NCI and the Centers for Disease Control and Prevention (CDC) to formalize and coordinate their internal efforts to study AYAs with cancer. Service Delivery To improve the standards and quality of cancer care provided to AYAs, the Alliance for Clinical Trials in Oncology published a position statement on elements of such quality cancer care (Zebrack et al., 2010). In addition, the National Comprehensive Cancer Network recently published its rec- ommended guidelines for the care of AYAs. There have also been efforts to recognize and support excellence in service delivery, including the Fertile Hope Centers of Excellence Program, which recognizes fertility preservation efforts. But there is a lack of coordination among these efforts, Hayes-Lattin stressed. There also is still a great need to define outcome measures of high- quality 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. There have also been efforts among other medical and advocacy organizations, including a number of charities that have combined forces to develop the International Charter of Rights for Young People with Cancer.6 “Since 2006,” Hayes-Lattin said, “we have amassed a really impressive array of medical institutions and advocacy groups that focus on at least some components of the adolescent and young adult cancer issue. The next opportunity is for us to map in a detailed way what that network looks like to increase the reach of organizations that have a part and to also find what gaps exist.” Hayes-Lattin added that Critical Mass is currently attempting to fill that mapping and coordination role. 6  See http://cancercharter.org (accessed October 8, 2013).

OCR for page 1
NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER 11 Psychosocial Aspects of AYA Cancer Diagnosis and Treatment As several speakers pointed out, young adults are at a unique stage in their emotional, cognitive, and social development, which cancer often disrupts. The attempts by these young adults to establish independence from their parents, to complete school, to enter the workforce with a desired career, to find a life partner, and to raise a family often are temporarily, or sometimes permanently, derailed (see Figure 2). Bradley Zebrack, associate professor at the University of Michigan School of Social Work, said that a young person’s experience with cancer is often the first time that he or she has confronted mortality in general. “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. figure 2 R02534--Young Adults with Cancer

OCR for page 1
54 NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER include for this population. The characteristics that Hudson suggested for optimal quality care included • assistance with managing disease and treatment effects; • cognizance among providers of the unique psychosocial context for AYA growth and development; • assessment of and attention to the cognitive, psychiatric, and psy- chosocial needs of AYA; • referral to available age-appropriate resources during treatment; and • facilitation of transition to survivorship care. Ideally, the team providing care to AYAs would include someone with expertise in AYA oncology as well as expertise in AYA developmental issues, Hudson said. She noted that although different care models are available, including those for cancer center–based care, community-based care, or a hybrid of these two types of care, “it is not only the fabric of an environ- ment that matters, it is the ethos of care” (quoting from a journal article [Morgan et al., 2010]). Hudson suggested that in addition to providing symptom manage- ment, addressing cancer-related health problems, and promoting a healthy lifestyle, a model program for AYAs with cancer should also be attentive to their specific needs regarding fertility, sexuality, and contraception. Mental health issues should also be addressed, including how the AYAs’ cancer experience is affecting their ability to develop intimate interpersonal relationships and attain their educational, career, or other life goals. Health education is also critical, particularly about cancer-related health risks and the types of self-management and monitoring that should be pursued. A model care system should also provide guidance on how to maintain effective access to health care and insurance, Hudson added. Finally, she suggested that care models should promote timely referral and initiation of treatment, attention to treatment protocol adherence, and smooth transi- tions from active cancer therapy to survivorship care. 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). Rebecca Block, AYA psychosocial research leader and assistant professor of medicine at the Knight Cancer

OCR for page 1
NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER 55 Institute at OHSU, studied the psychosocial components in programs avail- able to this population with cancer and found that the programs provided a range of services, including patient/peer navigation, physical therapy, genetic counseling, palliative care, peer support, chaplaincy, and nutri- tional counseling and partnerships with community-based organizations. However, many programs lacked some of the key components identified by Hudson as being critical. None provided legal services. Most assessed the psychosocial needs of their AYA patients only when the need for such assess- ment was identified. “These assessments aren’t happening unless someone’s noticing or saying something,” Block commented, and she added that other related issues that might be problematic are not assessed. Only one program did a comprehensive assessment on every single AYA who participated. “It’s great to do what we think patients need,” she said, “but it’d be even bet- ter to do what we know each patient needs. This requires consistent and comprehensive assessment.” There are few service delivery standards or standard of care guidelines for AYAs with cancer, Block said, and this has led to a situation in which there are many different models for providing care for these individuals. Even models providing a specific service that is stipulated by treatment guidelines, such as peer support, vary in how they provide that peer sup- port, she said, “and, maybe most importantly, we have no idea what they’re actually doing for people.” Most programs measure their effectiveness by such metrics as the number of patients participating in their programs and patient satisfaction. “The outcomes evaluated are extremely limited,” Block said, and she called for psychosocial care to be informed by evidence. As she noted, “Measuring satisfaction is not a substitute for measuring psychoso- cial outcomes.” Block also noted that most psychosocial programs for AYAs with cancer are philanthropically funded, with a few programs acquiring grants to sup- port the development and testing of a specific intervention. She said that sustaining such funding is a challenge for most programs. 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.

OCR for page 1
56 NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER BOX 3 Examples of Care Programs for AYA Patients with Cancer Thriving After Cancer The George Washington Cancer Institute in Washington, DC, offers Thriving After Cancer (TAC)a clinics that specialize in follow-up care for survivors who have completed active treatment for cancer. For adult survivors of pediatric cancer, TAC provides care in an appropriate adult setting. The TAC clinic also provides comprehensive services to survi- vors of adult-onset cancers. TAC takes a multidisciplinary approach and coordinates care with primary care providers to address the health risks and late effects of treatment. TAC provides not only medical care but also psychosocial services, and its care team includes psychiatrists, nutrition- ists, legal experts, and social workers. Preventive health care services are also provided, including a comprehensive fitness assessment with customized exercise plan as well as nutrition workshops. In addition, TAC provides career and vocational counseling, help with financial assistance and using health insurance, and free legal advice. 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. The members of the group also meet on their own for happy hours and volunteer opportunities.  Planet Cancer Planet Cancerc is an online community of young adults in their 20s and 30s with cancer that offers a place to share insights and explore fears and other emotions. It offers online support groups and forums. a  See http://smhs.gwu.edu/gwci/patient-care/survivors/tac (accessed October 24, 2013). b  See http://www.lifewithcancer.org/young_adults.php (accessed October 24, 2013). c  See http://myplanet.planetcancer.org (accessed October 24, 2013).

OCR for page 1
NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER 57 Teen Impact Program at Children’s Hospital Los Angeles Teen Impactd is a group-based psychological, emotional, and social support program of the Children’s Center for Cancer and Blood Diseases at Children’s Hospital Los Angeles. The primary service of the Teen Impact program is the support group meeting, but the program also offers a 3-day retreat and sponsors various special activities and events throughout the year, including art workshops, parties and celebrations, field trips, and music and cultural events. Teen Impact’s 3-day retreats for teens and young adults with cancer include outings to amusement parks and time to socialize with peers. Special group activities are planned each day to promote diversity, individuality, and group cohesion and bonding and to focus on identified themes and issues of survivorship. A physician and nurse attend all retreats to provide care for teens who are still receiving treatment or who have special medical needs. Teen Cancer America Teen Cancer Americae has a number of activities aimed at improv- ing 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). e  See http://www.teencanceramerica.org (accessed October 24, 2013). f  See http://hcri.org/programs/change-it-back (accessed October 24, 2013). continued

OCR for page 1
58 NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER BOX 3 Continued expansion of needed services to the AYA cancer population and increasing awareness about the services that are available to patients and their families. To receive a center of excellence desig- nation, a cancer center, hospital, or clinic must directly provide or facilitate the following: • Fertility counseling • Health insurance and financial counseling • Clinical trial education and facilitation • Psychosocial support • Transition to surveillance and survivorship care services One participant suggested that standards and levels of training should also be developed for providers of psychosocial support for this population. Freyer suggested additional medical training in survivorship care at the undergraduate level and at the graduate level in pediatric medical oncol- ogy fellowships. He also suggested establishing primary care residencies to provide training opportunities in caring for AYAs with cancer. 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 Web- based 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 educa- tion programs that focus on the AYA cancer patient. Research Gaps Several workshop participants noted research gaps that exist for AYAs with cancer, including a lack of research on 14 See http://www.passportforcare.org (accessed October 8, 2013).

OCR for page 1
NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER 59 • psychosocial and developmental issues and the best ways to address them; • late treatment effects, including secondary cancers and how to prevent and monitor for them; • factors that enhance resilience among AYA cancer survivors and the influence of social networks on outcomes; • ways to preserve or restore fertility; • the socioeconomic consequences of AYA cancer, broken down by cancer type and treatment, and how the cancer experience affects career choices and trajectories; • the best institutional practices or delivery models for treating AYAs with cancer and fostering transitions into survivorship care; • access to care and the influence of the ACA and other measures aimed at addressing health care disparities; and • substance use patterns and effective interventions. Research Challenges There are several challenges involved in studying AYAs with cancer, including the heterogeneity of the population, the difficulty of recruiting AYAs for research projects, and bias in survey responses. As many workshop participants pointed out, the AYA category covers a large range of ages with a great deal of biological and developmental variability. Determining the best way to divide AYAs into subgroups for analysis can be challenging, Rechis said. Furthermore, differences among ethnic, educational, and treat- ment subgroups can influence research outcomes and make it difficult to apply results from a particular subgroup to the group as a whole. AYAs traditionally have a low participation rate in clinical research. 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 clini- cal trials (Parsons et al., 2011), compared to about 60 percent of pediatric cancer patients. Thirty-four percent of those of ages 15 to 19 were enrolled in clinical research, while only 3 percent of those from 35 to 39 were enrolled, similar to the rate for older adults with cancer. The AYA HOPE Study found that only 7 percent of the survey respondents participated in a clinical trial. The top reason respondents gave for not participating in a trial was concern that the treatment they might receive would not have been sufficiently tested.

OCR for page 1
60 NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER To encourage more AYA participation in survey research, some par- ticipants suggested offering financial incentives, such as paying participants $25 for completing a study. Benjamin Rubenstein noted that such financial incentives would prompt him personally to participate in research. “Money would incentivize me, or just an Amazon gift card,” he said. “It does not even have to be for that much.” Another participant agreed that “money talks” for the younger population but said “a 39-year-old is not going to be as impressed with a $25 gift card to Amazon as an 18-year-old.” Farrish suggested, “If the medical community takes better care of us, we are going to want to give back and take better care of the next person to get diagnosed” by participating in research. Rubenstein suggested that one way to improve AYA participation in research would be to tailor communications about such research to this population. “If you want young adults to be more responsive, word it the way that we talk,” he said. “Remember who your audience is and relate to us.” Some researchers have used online tools to recruit AYA participants for their studies, but these online surveys may be subject to bias, with women being more likely to respond than men, for example. One participant noted, “We do lots of surveys that get us good information, but specific information from specific populations. We need to look at other methods for gathering data, including analyzing online conversations.” Surveys available only in English can preclude the participation of non-English speakers, Brenda Nevidjon pointed out. Increasingly, however, surveys are being administered in multiple languages, as one participant noted. 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 com- munity being studied, another participant suggested. “You need to address the questions the community finds relevant and work in partnerships so they can be answered,” he said. But engaging the community in research requires additional resources, which grants should provide, Casillas said. “There has to be a lot of groundwork with community-based participatory research,” which is important to gain the trust of the community partners she said. “This is an additional cost within research studies that is often thought about after the fact and I would encourage us to think about it early on in our grant planning process.”

OCR for page 1
NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER 61 Research Opportunities In addition to research challenges, there are new research opportunities for those studying the AYA population with cancer, including novel online databases and data linkages. In particular, Yabroff mentioned the Cancer Research Network, which is a group of managed care organizations that can address research questions collectively (Nekhlyudov et al., 2013). The Cancer Research Network has health care delivery information about indi- viduals with and without cancer of all ages, she noted. Much of the work exploring longitudinal patterns of care is done exclusively in the population aged 65 and older, she said. “More work with patterns of care and health care delivery in this younger population using existing data resources will be important.” Yabroff added that hospital and ambulatory care discharge data are increasingly linked to state-based cancer registry data. Such linkages can enable certain types of research that were previously not possible. ASCO also recently launched a large database for patient treatment data collected by ASCO physicians. Several speakers stressed that AYAs are part of a wired generation that relies on the Internet for much of its information gathering and for interact- ing with others. Thus, researchers and those who provide care for this popu- lation need to be aware of and leverage online opportunities. One researcher reported that in a study of resilience, he is assessing AYAs with cancer through online surveys. “They are easy to do, the kids don’t mind doing them, and they are remotely available for multiple institutions,” he said, and he suggested embedding such assessments in all cooperative group studies in which AYAs participate. “Think of the outcomes we could collect, includ- ing longitudinal data,” he said. “We have the infrastructure for this.” Karen Emmons agreed that the time is right for online assessments, and Ganz said that the logistics for such assessments would not be too costly, given nearly universal access to computers and the Internet in this population. Others suggested reaching out to AYAs with cancer via email and social networks in order to encourage them to participate in clinical research. Rubenstein said that he tends to fill out cancer surveys that he receives through Twitter. 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).

OCR for page 1
62 NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER updated database could collect outcomes that could inform patient care in real time, she said. Another participant noted that the Teenage Cancer Trust has developed an app for smartphones that follows such a model. Leonard Sender, director of clinical oncology services at the Chao Family Compre- hensive Cancer Center of the University of California, Irvine, added that this could be another tool for engaging patients in crowd source research. “The concept is that the patient is also the researcher,” he said. In addition, researchers are starting to analyze the online conversations at Planet Cancer and other websites as a way of assessing the concerns of AYAs. Policy Opportunities Several speakers suggested specific policy measures that could improve care for AYAs with cancer, such as fostering more collaboration among vari- ous organizations and institutions and providing a clearinghouse for pro- grams focused on AYAs with cancer. Bleyer said, “We need a central place where we can learn from each other on how to put together AYA programs.” Fasciano added, “To have some central place where we could disseminate programmatic issues that were studied and evidence-based for this popu- lation would be a really big step.” Sender pointed out that the Journal of Adolescent and Young Adult Oncology has been publishing a series of articles about models of care, including those in Canada, Italy, and other countries. Hayes-Lattin and Bleyer suggested more collaboration between the NCI and CDC working groups focused on AYAs with cancer as well as between government agencies and nonprofit organizations, such as the LIVESTRONG Foundation, and various medical institutions. “We can’t do it alone, and obviously we are going to need to work together,” Hayes- Lattin said. Ashley Smith, a behavioral scientist in the Outcomes Research Branch of the Applied Research Program at the NCI, responded, “Each of us in our own institutes have our own priorities and areas of emphasis. But we recognize there is important work happening in different institu- tions 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.

OCR for page 1
NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER 63 Wrap-up At the close of the workshop, Tom Kean, president and chief execu- tive officer of C-Change, provided a brief overview of the themes of the workshop and the suggestions for actions that he asked participants to con- template. Kean said that the primary focus throughout the workshop was on the patients, with frequent emphasis on fostering engaged patients and patient-centric programs. There were also many calls for better care coor- dination and integration. He added that numerous AYA-specific programs have been developed, but they vary a great deal, and there is a need to share information about those programs. “Let’s look at what we can learn from each other,” he said. Many programs also face sustainability challenges. Another overarching theme was the need for better information on the AYA population with cancer. He noted the challenge of the tremendous variability across the 15-to-39 age range of AYA patients—where they are in the developmental life cycle and the very different needs that they have—which can make it difficult to extrapolate research results to differ- ent segments of the population. “We ought to start looking at them by the blocks of age groups within that broad 15-to-39 age range,” he said, “and also start to drill down and look at them by cancer type and by treatment in studies.” Other factors that may influence the care and outcomes for AYA patients include differences in lifestyle and culture, differences in family support and other personal connections, and the highly mobile nature of this population, he added. He also said that those working in the field need to outline research priorities, develop better research tools, foster clinical trial accrual, and make better use of existing data. Kean reiterated the need to incorporate palliative care across the can- cer 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. There were calls for more training opportunities for a range of health care professionals in order to ensure an adequate and com- petent health care workforce to meet the needs of AYA patients with cancer. Kean also stressed that a cancer diagnosis is a life-altering event, which, especially among the AYA population, can alter many hopes and dreams. AYAs with cancer face many challenges in work and school. Relationships may be strained, and many patients are concerned about whether they will be able to have children in the future. These patients also often experience financial hardship as a result of their diagnosis, and many struggle to main-

OCR for page 1
64 NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER tain adequate health care coverage and access to care. The provisions of the ACA could help address those coverage and access challenges, he said, but they are not sufficient on their own. “We need to be speaking out on these issues,” he said. “We have low public knowledge of what is in the ACA. People still do not understand what is there, and we need to do a better job as a collective community to spread the word.” Another common theme was the need for better ways to communicate with AYA patients. Kean said that it will be important to develop commu- nication strategies and tools that are tailored to the way AYAs communicate among themselves, for example, via social networks and online tools. 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. But, Kean said, investigators also need to give back to the participants by providing information about what they are doing with the data and what the results may mean to patients like them. “This is what happens in com- munity participatory research all the time,” he said. “It is very important for us to help people understand what we are doing when we want to [engage them in] research, especially for those who do not have a lot of experience [with clinical research]. Noting the progress made since the 2006 NCI PRG report, Kean said it was encouraging to see momentum for making improvements in the care of AYA patients with cancer, and he urged the workshop participants to build on that momentum for further progress.