Care For Adolescents And Young Adults Research Articles

AB014. Cancer in adolescents and young adults

: Cancer remains the most common cause of disease-related death in adolescents and young adults (AYAs) in high-income countries, their overall survival now exceed 80%. Recognition of the unique distribution of diseases in the AYA population with cancer and further understanding of the distinctive biology of cancers in AYAs will lead to continuing gains in clinical outcomes. Many of the challenges faced by AYAs with a diagnosis of malignant disease are shared by others with chronic medical conditions and even their healthy peers, such as a sense of invulnerability that may contribute to delays in diagnosis. A particular need for psychological support has been identified for AYAs with cancer, even after active therapy has been completed and especially in the context of palliative care. Notable needs also include fertility preservation and navigation through the multiple transitions in the cancer journey. Additionally, the “cost of cure” in the form of short-term, treatment-related morbidity and mortality and late effects is also discussed. This talk aims to increase awareness in the challenges in the care of AYA will cancer but also will high light the important role of the pediatrician and primary care provider in the referral at the time of diagnosis and the importance of participation in clinical trials. In addition, it also aims to lay down the participation of the general practitioner in programs devoted to AYAs with cancer, with complementary educational initiatives in the years after treatment addressing the challenges of survivorship, including secondary prevention of long-term morbidity and mortality.

Sink or Collaborate: How the Immersive Model Has Helped Address Typical Adolescent and Young Adult Barriers at a Single Institution and Kept the Adolescent and Young Adult Program Afloat.

The unique needs of adolescent and young adult (AYA) oncology patients have been identified through research and well described in the literature.1–4 Defined as individuals aged 15–39 years, these patients benefit from age-appropriate multidisciplinary care with attention to psychosocial, fertility, financial, and physical effects of cancer, from diagnosis through survivorship. These are termed the pillars of AYA care. With the goal of improving outcomes for the 72,000 AYA patients diagnosed with cancer every year in the United States, AYA programs are being developed. Organizations such as Teen Cancer America (TCA, www.teencanceramerica.org) and Critical Mass (criticalmass.org) provide advocacy, collaboration, and resources for personnel, as well as physical space for AYA patients at major medical centers. Early reports of successful programs have been mitigated more recently by recognition of real barriers to successful program development, prompting an ongoing national dialogue. This article seeks to examine our institution's model and offer solutions to overcome real and perceived barriers to optimal AYA oncology care. Specifically, we examine our institution's model that involves a pediatric oncologist AYA champion employed within an adult cancer center, which we term the Immersive Model. This differs from other models that typically separate pediatric and adult oncology by building and department or medical group. Traditionally, AYA programs have been created to bridge the gap between pediatric and adult centers, often using acute lymphoblastic leukemia (ALL) care as a model. Pediatric oncologists would expand the age of patients seen upward, to provide direct care or participate in tumor boards with adult medicine colleagues. There is a data-driven consensus in the pediatric oncology community that so-called pediatric-inspired regimens improve outcomes for AYA patients compared with standard adult approaches for ALL and a perception that the medical oncology world has been slow to universally adopt these regimens with variation in levels of adoption across centers.5–8 Controversy regarding the optimal treatment for ALL continues at many centers, causing AYA program growth to be hindered. Moffitt Cancer Center (MCC) is a National Cancer Institute-designated Comprehensive Cancer Center based in Tampa, Florida that is uniquely organized by multidisciplinary disease teams rather than the more traditional model of departments of medicine, surgery, and other specialties. Thus, it is common for physicians to report to chairs with different, medical, or surgical, for example, board certifications and training than their own. The AYA program at MCC is led by a pediatric oncologist who reports directly to the chair of the Sarcoma Program, who is a surgical oncologist. MCC does not have a pediatric oncology practice and does not routinely care for patients under 15 years of age, although disease-specific expertise may be provided on a case-by-case basis, with administrative approval. MCC sees ∼16,000 new patients each year, with over 1500 of these new patients ranging from 15 to 39 years of age. This means that 100–125 unique AYA patients visit MCC each day, and 10% of inpatient beds are occupied by AYA patients. This volume prompted an administrative decision to contribute hospital resources to AYA patients, with coordinator support. Clinically, the Immersive Model began at MCC with a pediatric oncologist from All Children's Hospital providing care to sarcoma patients up to 40 years of age with select diagnoses. The program continues to collaborate with Johns Hopkins All Children's Hospital in a variety of ways, including several ongoing research collaborations and multiple physicians with clinical privileges at both facilities. Other groups, bringing broad and necessary expertise, began participating in the program (Fig. 1). MCC has grown to a multidisciplinary AYA Committee that is structured with five subcommittees that focus on: fertility, research, patient education, social events, and psychosocial issues. The entire group meets monthly in an open forum to share communication and discuss opportunities, provide updates on new and ongoing committee initiatives, and review factors that facilitate and obstruct local AYA care. Open in a separate window FIG. 1. AYA Program Organizational Chart: The AYA program incorporates many disciplines and areas of expertise together across traditional cancer center departments. AYA, adolescent and young adult.

Call to integrate supportive care and patient reported outcomes in early phase clinical trials: An exploration of adolescent and young adult (AYA) participation on phase I trials of novel anticancer agents.

149 Background: Adolescent and young adults (AYA) aged 15-39 years with cancer represent a patient population with very unique needs extending into the psychosocial realm. Consequently AYA participation on cancer clinical trials has been dismally low in recent decades, particularly on early phase trials with investigational agents. In an effort to better understand AYAs with advanced cancer, we analyzed their characteristics and participation on phase I clinical trials. Methods: We queried a department database to identify 1489 consecutive pts treated on phase I trials bw Dec 2004-July 2013 and then divided into 2 age-based groups (AYA 15-39y, mid age 40-64y) for analysis of their baseline characteristics, participation, time to treatment failure (TTF), and imaging response. We then calculated the odds ratios of achieving a favorable clinical benefit (defined as a RECIST response of prolonged SD≥6m+PR+CR) for AYAs vs mid-age pts. Results: AYAs represented 15% (n = 220) of participants treated on phase I trials while 67% (n = 991) were middle age. Most AYAs were women (63% female, 33% male) w median age being 32.6 years and a median of 3 prior therapies. AYAs most commonly had GYN (n = 41, 19%), sarcoma (n = 39, 18%), GI (n = 35, 16%), thoracic/head/neck (n = 31, 14%), melanoma (n = 27, 12%), and breast (n = 20, 9%) cancers. AYA had a comparable median TTF of 3.3m to mid age pts (3.5m). Overall, 369 (37%) mid age and 96 (44%) AYAs received a non-FDA approved agent. Imaging responses among AYAs showed 93 (42%) SD including 42 (19%) prolonged SD (median duration 9.7m), 34 (15%) PR (median duration 9.5m), and 2 AYAs with a CR lasting 36.2m and 50.1m. Conclusions: AYA patients represented just 15% of phase I clinical trials participants; none of these trials measured patient reported outcomes or quality of life indices, highlighting an urgent need for comprehensive supportive care integration into AYA care to tend to the unique psychosocial, economic, and family needs of this population to ultimately identify and overcome barriers to clinical trial participation.

1438O_PR - Report on ESMO/SIOPE European Landscape project key results: Mapping the status and needs in AYA cancer care

Background: Adolescents and young adults (AYA) are a distinct group at the interface between children’s and adult’s cancer services that require specific clinical management and care. This survey explored health care providers' practice patterns, knowledge and available services regarding AYA cancer care. Methods: A link to an online survey was sent by e-mail to all members of ESMO and SIOPE, ESMO national representatives and circulated to several European oncology groups. The questions covered the following topics: demographics, education and access to specialized care for AYA, research and supportive care opportunities, as well as demands for further education. Contingency tables for each question were calculated and were further explored by sub region in Europe using chi-squared and Fisher’s exact test. Results: 323 responses were collected from all countries across the world. We report the results from the 266 practitioners responding from Europe. Over two-thirds report that they: Do not have access to specialized centers for AYA with cancer (67%), Are not aware of any cancer research studies or clinical trials focused on AYA (69%), Have no access to a specialist cancer service for late effects management (67%). The majority of the professionals responding are able to refer AYA patients to professional psychological support and specialized social workers. However more than half report no access to an age-specialized nurse, specialized AYA education or a learning mentor. Furthermore, a substantial number of professionals report that their AYA patients do not have access to fertility specialists (38%), rising to 76% in Eastern Europe (EE). The lack of specialized AYA care was more profound for practitioners from EE and South Eastern European (SE) countries. Conclusions: Less than one half of European health-care providers who treat AYA with cancer have access to specialized centers and research initiatives for this group of patients with special needs. This survey revealed important under-provision and inequity of AYA cancer care across Europe. Improving care using education and research focused on AYA is a growing priority for both ESMO and SIOPE. Legal entity responsible for the study: ESMO, SIOPE Funding: ESMO, SIOPE Disclosure: D. Stark: Receipt of research grant income in AYA cancer from the National Institute for Health Research, Cancer Research UK, the Teenage Cancer Trust and research support from Pharmamar Inc and Astra- Zeneca Inc. F.A. Peccatori: Fees from Roche, Astra Zeneca, Clovis and Ipsen. S. Bielack: Fees for participation at Advisory Boards in Pfizer, Bayer, Lilly, Novartis, Isofol. All other authors have declared no conflicts of interest.

Thyroid cancer in adolescents and young adults.

Despite the increase in thyroid cancer incidence among adolescents and young adults (AYAs), this group has received limited attention. We reviewed the epidemiology and challenges of thyroid cancer care among AYAs, and proposed a research agenda to improve their care. Thyroid cancer is the most common cancer in American adults 16-33 years of age. AYAs with thyroid cancer face challenges including overdiagnosis reduced healthcare access and inconsistent care. Successful treatment of these patients results in additional challenges due to ongoing side effects of treatment as well as lasting impacts on their quality of life. These challenges should fuel a collaborative research agenda aimed at improving the quality of care for AYAs with thyroid cancer across the spectrum of diagnosis, treatment and survivorship.

Les cancers des adolescents et des jeunes patients : vision épidémiologique et organisations des soins en France

In adolescents and young adults (AYA), cancers are rare but represent the third significant cause of death. The aim of this paper was to investigate epidemiological data and pathways of care of AYA in France. During the 2000-2008 period, overall age-standardized incidence rates (ASR) were 254.1/106 in 15-24-year-olds. The most frequently diagnosed cancers in male AYA were malignant gonadal germ-cell tumors and Hodgkin's lymphoma, and were melanoma, thyroid carcinoma and Hodgkin's disease in females. The ASR appeared stable over time. During the 2000-2004 period, the 5-year overall survival for all cancers was 81.8%, with differences between genders and age groups: 78.8% for males and 85.2% for females; 78.5% in 15-19-year-olds and 84.3% in 20-24-year-olds. Survival has significantly improved over time. During the 2006-2007 period, the pathways of care for French adolescent patients with cancer were heterogeneous: 82% were treated in an adult environment, 27% were included in clinical studies, and in 54% of cases the management decisions were taken in the context of a multidisciplinary team. Studies looking at management of AYA with cancer have shown a wide disparity and a lack of collaboration between adult oncologists and pediatric oncologist. An AYA cancer multidisciplinary interest group has been created to determine priorities and coordinate efforts to improve AYA cancer services and care.

Disparities in Adolescents and Young Adults With Cancer

Cancer care for adolescents and young adults (AYAs) focuses on the care of patients aged 15 to 39 years. Historically, this group has favorable outcomes based on a preponderance of diagnoses such as thyroid cancers and Hodgkin lymphoma. Improvements in outcomes among the AYA population have lagged behind compared with younger and older populations. We discuss and review recent progress in AYA patient care and highlight remaining disparities that exist, including financial disadvantages, need for fertility care, limited clinical trial availability, and other areas of evolving AYA-focused research. Survival rates have not improved for this age group as they have for children and older adults. Disparities are present in the AYA population and have contributed to this lack of progress. Recognizing disparities in the care of AYAs with cancer has led many medical specialty disciplines to improve the lives of these patients through advocacy, education, and resource development. Research addressing barriers to clinical trial enrollment in this population, quality-of-life issues, and the improvement of survivorship care is also under way.

Mapping Adolescent Cancer Services: How Do Young People, Their Families, and Staff Describe Specialized Cancer Care in England?

Specialized cancer services for adolescents and young adults (AYAs) are being developed in a number of countries to address the particular needs of this population. However, the evidence base to inform service design and associated care delivery is inadequate. The aim of this study was to undertake a mapping study to identify the main components of AYA cancer care to be studied further to reflect the range of approaches to service delivery currently provided in England. Semistructured interviews were conducted with young people, their family members, and staff in 11 AYA principal treatment centers. Using different levels of extraction, these data were drawn together to illuminate the main components of AYA cancer care and the range of approaches to service delivery. Young people, family members, and staff consistently identified and valued similar areas of AYA cancer care: caring and supportive staff, activities designed for AYAs, and an environment that feels like home. The mapping exercise successfully informed the selection of 4 sites for an in-depth case study. The main components of specialized AYA care have been described. This description can assist clinical teams interested in developing or refining their approach to AYA cancer care. It could also offer a way to agree priorities, based on the key components young people consider as being essential for their care, and facilitate services to benchmark against these key components, and it could also go some way to address international AYA goals to support global change to reduce the current disparities in care.

Adolescents and Young Adults (AYAs) Living with Cancer: Why Palliative Care Fits Best (FR453)

•Recognize the symptom burden in adolescents and young Adults (AYAs).•Recognize the unique psychosocial concerns of the adolescent and young adult patient.•Identify ways of integrating palliative care into the care of the adolescent and young adult with cancer. An estimated 70,000 AYAs receive a cancer diagnosis each year in the US. The AYA is defined as patients aged 15-39 years at cancer diagnosis. The AYA age spans the gap between pediatric and adult healthcare providers. Cancer occurring during this age range affects patients’ developmental trajectory with its impact on emotional growth (both positive and negative), physical development, and behavior. This population is at risk for a diverse array of cancers that exhibit unique behavior. Cancers in this age group include malignant epithelial neoplasms (eg, thyroid carcinoma, malignant melanoma), sarcomas, and malignancies involving reproductive organs. Leukemia exhibits less favorable cytogenics and has a less favorable outcome. Patients experience a wide array of emotional complications from their cancer diagnoses, such as learned decisional passivity or social anxiety because of extended social isolation or shrinkage in social network. These patients may have fertility concerns and/or young children needing special attention. AYA patients may existentially mature faster than anticipated. Teams managing these patients may experience problems with noncompliance, risky behavior, or patient isolation. Current cancer care models relegate these patients to either the pediatric or adult oncologic realm. Younger patients receive aggressive treatment at the end-of-life. Palliative care physicians become involved with these patients by their ability to manage symptoms and improve quality of life in all domains. This session will present, by way of research, didactic, and case presentations, an argument for the use of palliative care in the care of adolescents and young adults. The session will cover five main areas: 1) common symptoms experienced by the AYA; 2) common psychosocial issues associated with the AYA patient; 3) examples of palliative care intervention in AYA care; 4) practical recommendations regarding the emotional and behavioral issues associated with AYAs; and 5) approaches to the management of the young AYA survivor.

Collaboration and Networking.

Awareness of the need for collaboration across pediatric and adult cancer to care for adolescents and young adults (AYAs) arose from the recognition of the unique characteristics of AYAs with cancer. Neither pediatric nor adult oncology hospital departments are able to provide age-appropriate care single handedly. The best way to bridge the gap in care of AYA cancer patients is to centralize aspects of their care within dedicated AYA care programs, including the following essential components: provision of developmentally appropriate and multidisciplinary (supportive) care, availability of AYA inpatient and outpatient facilities and healthcare professional AYA expertise as collaboration between adult and pediatric departments. Barriers are related to the slowly emerging evidence of benefit, cultural differences (collaboration between pediatric and adult oncology professionals), administrative and logistic challenges (small number of AYAs makes it difficult to create an AYA program in every hospital) and financial aspects (dependency on philanthropic funds). The sustainable development of an AYA program requires acceptance as a standard of care at the clinical and patient community and at government level. To improve the quality, equity and quantity of research and innovation in AYA cancer care across the world, it is necessary to join forces and collaborate in international networks to study issues such as the features of quality care, collaboration between pediatric and adult clinical teams, trial groups and professional societies, and AYA-specific groups such as Critical Mass, Canteen or European Network for Teenagers and Young Adults with Cancer.

Measuring Transition Readiness: A Correlational Study of Perceptions of Parent and Adolescents and Young Adults with Sickle Cell Disease

Adolescents and young adults (AYAs) often transfer from pediatric to adult care without adequate preparation, resulting in increased morbidity and mortality. The purpose of this descriptive research study of parent/AYA dyads was to measure perceptions of transition readiness. Factors that were found to be associated with perceptions of increased readiness to transition included AYA age, the amount of responsibility AYAs assume for their healthcare and the degree of parent involvement. More attention should be focused on these aspects of care to improve transition from pediatric to adult care for AYAs with sickle cell disease.

Identifying and addressing the needs of adolescents and young adults with cancer: summary of an Institute of Medicine workshop.

Cancer is the leading disease-related cause of death in adolescents and young adults (AYAs). This population faces many short- and long-term health and psychosocial consequences of cancer diagnosis and treatment, but many programs for cancer treatment, survivorship care, and psychosocial support do not focus on the specific needs of AYA cancer patients. Recognizing this health care disparity, the National Cancer Policy Forum of the Institute of Medicine convened a public workshop to examine the needs of AYA patients with cancer. Workshop participants identified many gaps and challenges in the care of AYA cancer patients and discussed potential strategies to address these needs. Suggestions included ways to improve access to care for AYAs, to deliver cancer care that better meets the medical and psychosocial needs of AYAs, to develop educational programs for providers who care for AYA cancer survivors, and to enhance the evidence base for AYAs with cancer by facilitating participation in research.

Transition of Care Under One Roof at the Mcmaster Hemoglobinopathy Clinic

Transition from pediatric to adult care is a well-recognized challenge for adolescents and young adults (AYA) with sickle cell disease (SCD) and thalassemia. Transition of care for AYAs is a multi-layered process, involving the patient, their family, and healthcare providers, with an end goal of ensuring that transition is as smooth as possible for all parties involved. In 2013, McMaster University launched a comprehensive care clinic for patients with SCD and thalassemia where a pediatric hematologist and an adult hematologist work side-by-side, along with a shared team of allied health care providers. One goal of this clinic is to facilitate fluid transition, by maintaining continuity in the patient’s medical care and providing a familiar environment for AYA patients. The aim of this study was to assess baseline level of understanding about transition from pediatric patients and their parents, expectations for transition, and recommendations for a smooth transition. In addition, opinions and experiences from young adult patients who had experienced transition of care under a variety of models were collected in order to identify key elements of how to optimally facilitate transition of care.After an informed consent process, 17 participants were interviewed regarding their, or their child’s, transition of care. Interviews were conducted with 5 pediatric patients, 5 parents, and 7 young adults. One-on-one semi-structured interviews were conducted with questions ranging from types of medical visits, knowledge of transition, experiences with transition, and recommendations. Saturation was reached and data was analyzed using an inductive-iterative approach.Eight SCD patients and 4 thalassemia major patients participated in the study. Themes that emerged included: apprehension from pediatric patients about leaving a supportive care environment; desire for a patient orientation with both their pediatric and adult specialists prior to transition; desire for a peer support group from pediatric patients, young adult patients and families; and need for a well established transition education piece for patients and families. Young adult patient experiences were diverse, as most had experienced SCD or thalassemia care at different hospitals. Patients who had transitioned in the McMaster clinic were pleased with the opportunity to participate in clinic visits attended jointly by their pediatric and adult hematologists prior to transition of care. Patients were appreciative of the continuous involvement of other clinic staff.The baseline responses obtained from this study can guide policies in a combined pediatric-adult model Hemoglobinopathy Clinic. Completing transition of care “under one roof” has potential to provide a uniquely supportive environment for AYA patients. An overlap in clinic staff for pediatric and adult patients can facilitate a strong patient rapport with a consistent set of healthcare providers, and can help to ensure consistency of care and collaboration between providers as patients transition through the AYA stages of life. Steps can be put in place to ensure that transition is as undisruptive as possible and to eliminate patients feeling uncertain about their care process. DisclosuresNo relevant conflicts of interest to declare.

Integration of specialist palliative care services into a multidisciplinary adolescent and young adult (AYA) oncology team.

64 Background: Palliative care is recommended alongside standard oncological care for patients with advanced cancer or high symptom burden (Smith TJ, Temin S, et al. American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. Journal of Clinical Oncology. 2012;30(8)880-7.). AYA oncology patients are distinguished by several age-specific developmental and biopsychosocial factors, resulting in a unique impact profile (Wein S, Pery S, Zer A. Role of palliative care in adolescent and young adult oncology. J Clin Oncol. 2010;28:4819-4824). Methods: To examine the benefits of multidisciplinary AYA care, a palliative care fellow was incorporated into an existing AYA oncology team in Australia, for a 12 month period. This role facilitated assessment/management of symptoms, general health issues, treatment toxicity, end of life care and bereavement support. Results: Between 2012 and 2013, of 83 new patients were referred to the AYA oncology service, 27 (32.5%) were referred the palliative care fellow. Notably, 37% of patients referred were receiving curative intent treatment. 10 patients (37%) were referred at diagnosis for symptom management. Pain was the most frequent reason for referral (n=17 63%). A total of 7 patients (26%) were referred for advanced disease/terminal care. Conclusions: Evaluation demonstrates that onsite availability of palliative care services is acceptable, facilitates early referral and has encouraged collaborative, AYA multidisciplinary care. A significant additional finding has been recognition of the demand for symptom management of patients early in their cancer experience. Further development and evaluation of AYA specific palliative care is warranted.

Creating an adolescent and young adult cancer program: lessons learned from pediatric and adult oncology practice bases.

Driven by reports of unmet clinical needs and lack of survival improvement, programs for adolescents and young adults (AYAs) with cancer have become increasingly common across the United States during the past 10 years. Programs generally originate from existing pediatric or adult hospitals, serve all or a subset of patients between 15 and 39 years of age at the time of cancer diagnosis, and aim to work collaboratively with other branches of their institution to deliver superior care for AYAs. Until recently, programs responded to local needs and evolved without an established framework for growth. Over the past several years, organizations including NCCN have published guidelines for AYA cancer care and for the development of clinical AYA programs. This article reviews these publications, describes the growth and development of 2 nationally recognized AYA centers--Seattle Children's Hospital and Moffitt Cancer Center--and offers practical suggestions to assist developing AYA programs. AYA oncology is entering a new era of increasing public recognition and nationally coordinated growth, as evidenced by the recent establishment of the Change it Back's Centers of Excellence Program that codifies criteria for excellence in AYA cancer care. AYA programs have the potential to improve care for a vital and underserved patient population, stimulate collaborative research, and enhance relationships with patients, the local community, referring physicians, and donors.

Barriers and facilitators to successful transition from pediatric to adult inflammatory bowel disease care from the perspectives of providers.

For adolescents and young adults (AYA) with inflammatory bowel disease (IBD), the transition from pediatric to adult care is often challenging and associated with gaps in care. Our study objectives were to (1) identify outcomes for evaluating transition success and (2) elicit the major barriers and facilitators of successful transition. We interviewed pediatric and adult IBD providers from across the United States with experience caring for AYAs with IBD until thematic saturation was reached after 12 interviews. We elicited the participants' backgrounds, examples of successful and unsuccessful transition of AYAs for whom they cared, and recommendations for improving transition using the Social-Ecological Model of Adolescent and Young Adult Readiness to Transition framework. We coded interview transcripts using the constant comparative method and identified major themes. Participants reported evaluating transition success and failure using health care utilization outcomes (e.g., maintaining continuity with adult providers), health outcomes (e.g., stable symptoms), and quality of life outcomes (e.g., attending school). The patients' level of developmental maturity (i.e., ownership of care) was the most prominent determinant of transition outcomes. The style of parental involvement (i.e., helicopter parent versus optimally involved parent) and the degree of support by providers (e.g., care coordination) also influenced outcomes. IBD transition success is influenced by a complex interplay of patient developmental maturity, parenting style, and provider support. Multidisciplinary IBD care teams should aim to optimize these factors for each patient to increase the likelihood of a smooth transfer to adult care.

Family Members’ Retrospective Stories of the Treatment Stage of an Adolescent or Young Adult Who Subsequently Died of Cancer

Adolescents and young adults (AYAs) with cancer have been recognized as being disadvantaged within the present healthcare system. This article is part of a major study that was motivated by the principal researcher's own experience of her 17-year-old son dying of cancer and from current literature that highlights the lack of support and understanding of AYAs and their families. This article aimed to uncover from the stories of family members the experience after the treatment of an adolescent or young adult family member (aged 13-23 years) who subsequently died. Narrative inquiry was determined to be the appropriate methodology for this study. The participants were a self-selected purposeful sample of 26 family members whose narratives spoke of experience of having an AYA family member live with and die of cancer. The meta-narrative of the families' stories in the treatment stage resulted in 6 themes. This article provides the insights of experience of the family members within the treatment stage. The family members speak of a health system unable to respond to the AYA and family member's needs and the suffering sacrifice and courage of the AYAs and the family members. There is evidence that AYAs and family members are lost in the system, with minimum understanding or support for this unique group of people. Further research is required to assist the development of evidence-based best practice models of care for AYAs and their families.

Cancer in Adolescents and Young Adults in Countries with Limited Resources

Cancer in adolescents and young adults (AYA) represents a higher fraction of all cancer in countries that are still undergoing a demographic transition. Such countries tend to have much younger populations, and therefore unless they have a particularly low incidence of cancer in this age group, will have a higher burden of cancer (absolute number of cases with cancer) in AYA. Cancers in AYA are comprised of the tail end of the incidence curve of cancers that have their peak incidence, or occur almost exclusively in childhood, the beginning of the incidence curve of cancers that primarily affect the elderly, and a third set of cancers that have their peak incidence (or are at least common) in the AYA age group (e.g., testicular cancer, sarcomas, melanoma, thyroid cancer). Many, but not all, of these cancers require radiation or cancer surgery, but the poorest countries do not have a sufficient number of radiation therapy units and surgical oncologists, or indeed medical and pediatric oncologists, to deal with the burden of cancer they face. The AYA age group is particularly important, both with regard to their contribution to the economy now and in the future (the majority are in the "working" age-group defined as 15-64 years), as well as their important role in caring for their families. Moreover, some of these cancers are eminently curable with chemotherapy alone, and more could be cured by simply improving the efficiency of existing health services and providing education and training to both the public as well as oncologists and other specialists required for the care of AYA (although such individuals will not necessarily be exclusively concerned with this age group). Of particular importance is the detection and diagnosis of cancer patients at the earliest possible time in the course of their disease. Avoiding delays in initiating therapy, which are partly due to the poverty and lack of education of the public as well as to a failure on the part of primary health care providers to recognize the possibility of cancer, would lead not only to improved survival and less toxicity, but is likely to reduce the need for radiation as well as the cost of treatment. There are few good quality clinical trials that take place in the LMIC (in relationship to the extent of the existing cancer burden), and research training should be an integral component of capacity building. Research on the efficacy and toxicity of standardized treatment approaches that are either based on principles established in the HIC, or adapted from treatment protocols used in the HIC, would be a good place to begin, but health policy and multisectoral collaboration are essential if improved survival rates are to be achieved. Decisions will also need to be made regarding the treatment of diseases in which radiation or cancer surgery are important elements, when one or both of the latter are unavailable. Late effects are important in this young population in HIC, and protocol adaptations or design in LMIC should take into consideration the significant fraction of cured patients with late effects who were treated in HIC in an era where improving response and survival rates was the paramount consideration-the situation that applies today in less developed countries. Special adolescent units which better deal with psychological issues of young cancer patients are rare in LMIC and the psychosocial issues faced by adolescents are much less studied. Although survival is the first consideration, attention to psychosocial and financial issues may reduce existing delays in initiating therapy and also the fraction of patients that abandon therapy.

“The pediatric social worker really shepherds them through the process”: Care team members' roles in transitioning adolescents and young adults with HIV to adult care

Increasing numbers of adolescents and young adults (AYA) with HIV need to transition from pediatric to adult infectious disease care. Little research has examined the roles of the care team members in the transition process. Nineteen pediatric and adult providers with experience caring for HIV-infected AYA were interviewed to explore their perspectives on the roles of care team members on multidisciplinary pediatric and adult infectious disease teams. Interviews were transcribed and coded for emergent themes by independent reviewers. All care team members played important roles in the transition process. Qualitative analyses indicated that pediatric social workers played an especially pivotal role in facilitating the transition of AYA with HIV from pediatric to adult care. Pediatric social workers communicated with other providers and prepared the adolescent and family for the upcoming transition. Both pediatric and adult social workers engaged in assessment of psychosocial functioning and facilitated referrals to community resources. Social workers in the adult infectious disease clinic helped the adolescent and family adjust to the new setting. Pediatric medical providers supported the patient and family during transition and communicated pertinent medical information to the family and medical provider in the adult clinic. Participants stated that the role of the adult medical provider was to welcome the newly transition adolescent into the clinic and to obtain a new comprehensive medical history including sexual behavior. Findings offer insight into the roles held by various members of teams associated with the transition of AYA living with HIV from pediatric to adult care. The effectiveness of medical care teams can influence the quality of care provided to patients and can be improved by understanding team roles.

Clinical trial participation and time to treatment among adolescents and young adults with cancer: does age at diagnosis or insurance make a difference?

Because adolescent and young adult (AYA) patients with cancer have experienced variable improvement in survival over the past two decades, enhancing the quality and timeliness of cancer care in this population has emerged as a priority area. To identify current trends in AYA care, we examined patterns of clinical trial participation, time to treatment, and provider characteristics in a population-based sample of AYA patients with cancer. Using the National Cancer Institute Patterns of Care Study, we used multivariate logistic regression to evaluate demographic and provider characteristics associated with clinical trial enrollment and time to treatment among 1,358 AYA patients with cancer (age 15 to 39 years) identified through the Surveillance, Epidemiology, and End Results Program. In our study, 14% of patients age 15 to 39 years had enrolled onto a clinical trial; participation varied by type of cancer, with the highest participation in those diagnosed with acute lymphoblastic leukemia (37%) and sarcoma (32%). Multivariate analyses demonstrated that uninsured, older patients and those treated by nonpediatric oncologists were less likely to enroll onto clinical trials. Median time from pathologic confirmation to first treatment was 3 days, but this varied by race/ethnicity and cancer site. In multivariate analyses, advanced cancer stage and outpatient treatment alone were associated with longer time from pathologic confirmation to treatment. Our study identified factors associated with low clinical trial participation in AYA patients with cancer. These findings support the continued need to improve access to clinical trials and innovative treatments for this population, which may ultimately translate into improved survival.