Adolescent And Young Adult Oncology Patients Research Articles

Implementing Mental Health Screening for Adolescent Hematology and Oncology Patients: A Quality Improvement Initiative.

Purpose: Adolescents and young adults (AYA) with chronic illnesses experience an increase in mental health concerns. A mental health screening (MHS) process for hematology and oncology patients was implemented in a single institution. The quality improvement project was conducted to integrate a MHS process, educate providers about the importance of mental health in this patient population, and evaluate the process. Methods: The COM-B (capability, opportunity, motivation-behavior) model for behavior change was used to inform strategic planning and Plan-Do-Study-Act (PDSA) methodologies for process improvement. Retrospective chart reviews and surveys were conducted to determine missed screening rates and providers' perceptions, knowledge, attitudes, and skills of the MHS process. Results: Of 334 eligible patient encounters, the missed screening rate was 15.0%, the overall error rate of completing the screening was 3.8%, the error rate of completing the suicide or self-harm indicator was 2.6%, and the missed medical social worker touch point was 4.8%. Conclusion: The rising rates of mental health concerns in AYA hematology and oncology patients call for streamlined MHS processes to improve the identification of patients who may need intervention and services. Processes should be tailored to workflows and available resources. Future PDSA cycles will include providing dedicated nursing education and determining the cost needed to meet the rising mental health needs of the AYA hematology and oncology population.

Creation of a quality improvement collaborative to address adolescent and young adult cancer clinical trial enrollment: ATAQI (AYA trial access quality initiative)

Adolescent and young adult (AYA) participation in cancer clinical trials (CCTs) is suboptimal, hindering further improvements in survival, quality of life, and basic understanding of cancer pathophysiology in this population. Prior studies have identified barriers and facilitators to AYA CCT enrollment; however, few interventional studies have attempted to address these barriers and measure tangible changes. In September 2020, a task force was established to address CCT enrollment barriers at a multi-institutional level utilizing a quality improvement collaborative model for improvement. The AYA Trial Access Quality Initiative was developed with the goal of bring multidisciplinary teams together across multiple sites to learn, apply and share their methods of improvement. It uses a structured process of learning sessions lead by quality improvement and clinical experts who help facilitate learning and problem solving which are followed by action phases. During the pilot phase of the collaboration, one key driver of CCT enrollment in AYA's will be addressed: communication between adult and pediatric oncology by implementation of various interventions at sites. The number of AYAs screened for and enrolled on CCTs will be tracked over the course of the collaborative along with the process measures. It is expected that the interventions will promote engagement of stakeholders in the process of screening AYA oncology patients for eligibility on CCTs. This will hopefully create a favorable environment conducive for increasing enrollment on CCTs and lead to the development of a system-wide quality improvement framework to improve AYA CCT enrollment.

Posttraumatic stress symptoms and financial toxicity among adolescent and young adult oncology patients and their caregivers at cancer diagnosis.

Adolescent and young adult oncology (AYAO) patients and caregivers may experience significant psychosocial dysfunction and financial toxicity. Understanding early risk factors is critical to improving survivorship trajectories. The authors conducted a cross-sectional study of baseline survey data from a prospective cohort of AYAO patient-caregiver dyads enrolled within 1month of medical oncology treatment initiation. Posttraumatic stress symptoms (PTSS) were measured by the Impacts of Events Scale-Revised, and financial toxicity was measured with the Comprehensive Score (COst). The authors fit models of linear association between PTSS, financial toxicity, and other end points and pairwise associations of PTSS and financial toxicity within dyads. The analytic cohort contained 41 patients, 37 caregivers, and 34 complete dyads. Clinically-concerning PTSS were observed among patients (44%) and caregivers (52%). The median COst scores were 20.0 for patients (quartiles, 12.5-29.5) and 22.0 for caregivers (quartiles, 12.8-26.0), which were consistent with high financial toxicity (patients, 46%; caregivers, 44%). PTSS were positively associated with financial toxicity (P=.013 for patients, P=.039 for caregivers), subjective distress (P<.001 for all), depressive (P<.001 for all) and anxiety symptoms (P=.005 for patients, P=.024 for caregivers), and poorer quality of life (P<.001 for patients, P=.003 for caregivers). A significant paired association was not found in PTSS (Pearson correlation coefficient [PCC], 0.23; 95% confidence interval [CI], -0.15 to 0.56). Financial toxicity was positively associated within dyads (PCC, 0.65; 95% CI, 0.36-0.83). At diagnosis, AYAO patients and caregivers exhibit substantial PTSS, which are associated with greater financial toxicity and other psychosocial distress.

Evaluating Perspectives of a Smartphone Medication Application in the Adolescent and Young Adult Oncology Population: A Qualitative Study

Purpose: Medication adherence research involving adolescent and young adult (AYA) oncology patients has consisted of small, retrospective studies demonstrating poor adherence rates. Technology plays an active role in attempt to improve medication adherence. There is a growing body of literature investigating the role of smartphone applications (apps). We hypothesized a medication phone app, MedActionPlan Pro (MPP), leads to perceived improvement in medication adherence. Methods: Thirty AYA oncology patients actively receiving treatment (AYA defined as 15-30 years) at Nationwide Children's Hospital were enrolled. Participants downloaded the MPP app on their smartphone for 3 months, during which time participants were provided text messages and alerts to encourage medication adherence. Post-app use, participants completed semi-structured interviews. Interviews were audio-recorded, transcribed, and independently coded to determine consensus thematic content. Results: Thirty AYA oncology participants (16 male), median age 17.5 (range: 15-30 years), participated in the study, with 22 participants (55% male) with a median age of 18 years (range: 15-30 years) participated in the final qualitative survey interview. Participants reported positive views about app utilization and perceived improved medication adherence. Additional themes included perceived decreased forgetfulness, improved organization, and identified customization for medications within the app was most important to AYAs. Conclusion: AYA oncology patients reported improvement in perceived medication adherence utilizing MPP and identified several features they thought would lead to improved medication adherence. These findings, integrated with previous literature, support the further need to investigate the utility of medication adherence apps that fit the unique needs of AYA oncology patients.

Quantifying the psychosocial impact of a weekend retreat on adolescent and young adult (AYA) oncology patients

Objective This study aimed to determine if AYA oncology patients experienced a quantifiable improvement in psychosocial outcomes after attending a weekend retreat with their peers. Methods AYA oncology patients attended a weekend retreat. They completed the Functional Assessment of Cancer Therapy – General (FACT-G) before, 1 month after, and 6 months after the weekend retreat. Controls were age-matched oncology patients who did not attend the retreat. Findings Retreat participants’ scores did not significantly change over time; however, retreat participants’ scores at 1-month follow-up were significantly higher than control group scores. Conclusions AYA oncology patients may experience transient improvement in psychological well-being after attending a retreat, but benefits may not be durable. Work remains needed to examine the impact of retreat attendance on specific aspects of psychosocial well-being. Implications for psychosocial oncology: Work is needed to decrease perceived attendance barriers for AYA oncology patients who have a low quality of life. Future retreat planners may consider modifying retreat activities and consider alternative retreat locations that appeal to campers with limited mobility, chronic pain, and/or other quality of life limitations. Additional study is needed to determine whether brief overnight or weekend retreats can be as effective as week-long camps in enhancing oncology patients’ quality of life. Future researchers should compare changes in weekend retreat attendees’ quality of life to changes in quality of life for a control group (e.g., via a waitlist control study design).

Empowering Adolescents and Young Adults to Support, Lead, and Thrive: Development and Validation of an AYA Oncology Child Life Program

PurposeThe majority of cancer treatment programs do not focus on the unique psychosocial support needs of adolescent and young adult (AYA) patients. Recognizing this disparity, a freestanding children's hospital utilized an interdisciplinary approach to bridge the gap and develop a comprehensive program to address issues specific to new diagnosis, treatment, and survivorship in AYA oncology patients. Methods and interventionsA pediatric hospital formed a multidisciplinary team to educate, engage, and empower AYAs to participate in the development of a comprehensive program. ResultsThe program enables peer-supported social networking and empowers patients to invest in their treatment and survivorship. The number of newly diagnosed adolescent patients accessing our program has increased 40% since the program began in 2015; attendees at AYA events increased from 99 in 2015 to 1312 in 2018, as has the number of AYA events per year. Following program implementation, our NRC Picker score of 89.3% ranks above the 90th percentile of all children's hospitals (benchmark 81.2%) on questions related to “involving teens in their care”. ConclusionsAYA Programs can provide age-specific spaces, empowerment events, and specific education curriculum that meet the unique needs of adolescents and young adults and may positively impact patient satisfaction.

Addressing Fertility in Adolescent and Young Adult Oncology Patients: A Descriptive Study

Adolescents and young adults (AYA) undergoing cancer therapy may be at risk for infertility as a consequence of their treatment and should be informed of their risk of infertility and referred to infertility specialists at the time of diagnosis. The overall aim of the study was to describe fertility consult practices in AYA patients at a single institution. We conducted a retrospective chart review over a 2-year time period collecting data on newly diagnosed or relapsed AYA oncology patients aged 10-30 years. Records of 57 charts were reviewed for documentation of initiation and completion of a fertility consult before starting cancer treatment. Demographic and medical data were collected to determine infertility risk stratification. Analyses included descriptive statistics, chi-squared analysis, and logistic regression analysis. Documentation of discussion of fertility risk before the initiation of therapy was noted in 19% of charts (n = 10). There was no statistically significant relationship between documentation of the initiation or completion of a fertility consult and infertility risk. Demographic and medical factors were not associated with higher odds of having completed a fertility consult. Documentation of the initiation of a fertility consult was associated with higher odds that a consult was completed (p < 0.001). Strategies are needed to improve documentation of discussions of infertility risk. Utilizing technology, promoting staff education, and developing enhancements in electronic medical record can provide triggers to promote documentation of the initiation of fertility consults. Implementing a fertility navigator could facilitate consultation and coordination of care for fertility preservation services.

Treatment intensity and symptom burden in hospitalized adolescent and young adult hematopoietic cell transplant recipients at the end of life.

Adolescent and young adult (AYA) oncology patients experience many physical and psychological symptoms at the end of life (EOL); however, data on these experiences for AYA patients who have undergone hematopoietic cell transplantation (HCT) remains sparse. We sought to investigate the characteristics of AYA patients aged 15-25 years who received allogeneic HCT and subsequently died while inpatient at our institution between the years 2008 and 2014. A standardized data extraction tool was used to collect information about patient demographics, treatment and symptoms. We found that during this time frame, 34 AYA patients had received HCT and died while inpatient at our institution, 23 (68%) of whom died because of treatment-related complications. Compared with non-HCT AYA oncology patients (n=35), patients who received HCT (n=34) were more likely to have died in the intensive care unit (71% vs 23%, P<0 .0001) and to have received mechanical ventilation (68% vs 17%, P<0.0001) or hemodialysis (53% vs 0%, P<0.0001) in the last 30 days of life. These findings demonstrate that AYA patients who receive allogeneic HCT receive intensive EOL treatment, suggesting that these patients may benefit from early integration of expert interdisciplinary services to prospectively assess and manage distressing symptoms.

Perceptions of stress in adolescent and young adult (AYA) cancer patients and survivors in Kansas City, KS, and Copenhagen, Denmark: A pilot study.

186 Background: Adolescent and Young Adult (AYA) Oncology is a developing field of medicine with unique challenges in the clinical setting. People at this stage of life face many difficulties, which may be compounded by lack of insurance coverage and barriers in accessing health care resources. The goal of this pilot study is to examine how stress levels and psychosocial well-being are affected by healthcare system, insurance status, and other AYA-specific factors. Methods: 38 AYA patients ages 15-30 who have received, or are currently receiving treatment for an oncology diagnosis completed an online survey and 10-item interview, with 29 patients at University of Kansas Medical Center, Kansas City, United States, and 9 patients at Rigshospitalet, Copenhagen, Denmark. Survey measures included the Perceived Stress Scale (PSS) standardized tool, and questions relating to patient concerns, resources utilized, and general thoughts on healthcare. Results: Differences in quantitative stress levels were not significant between the two study sites. In Kansas City, female gender was identified as a significant variable for increased PSS values. In addition, Kansas City patients expressed increased reported practical concerns, such as the role of social workers, transportation, insurance, and disruptions in work and school life due to treatment. Danish patients expressed more positive practical concern statements, citing Danish government resources such as physical therapy and psychiatry services. Qualitative data for both sites placed highest emphasis on the connection that AYA patients have with their healthcare team. Both U.S. and Danish patients reported diverse concerns and positive experiences. Conclusions: AYA oncology patients are a diverse group who have not yet been sufficiently studied, and face many struggles that are unique to this age group. More research on a broad scale is needed, as the data collected in this study suggest results that may prove significant with more time available and larger patient sample sizes. The first author of this abstract has been selected as a semifinalist by the Fulbright commission to expand this pilot project in 2017-2018.

Adolescent and young adult oncology patients: Disparities in access to specialized cancer centers.

Adolescents and young adults (AYAs) ages 15 to 39 years with cancer continue to experience disparate survival outcomes compared with their younger and older counterparts. This may be caused in part by differential access to specialized cancer centers (SCCs), because treatment at SCCs has been associated with improved overall survival. The authors examined social and clinical factors associated with AYA use of SCCs (defined as Children's Oncology Group-designated or National Cancer Institute-designated centers). A retrospective, population-based analysis was performed on all hospital admissions of AYA oncology patients in California during 1991 through 2014 (n = 127,250) using the Office of Statewide Health Planning and Development database. Multivariable logistic regression analyses examined the contribution of social and clinical factors on always receiving care from an SCC (vs sometimes or never). Results are presented as adjusted odds ratios (ORs) and 95% confidence intervals (CIs). Over the past 20 years, the percentage of patients always receiving inpatient care at an SCC increased over time (from 27% in 1991 to 43% in 2014). In multivariable regression analyses, AYA patients were less likely to always receive care from an SCC if they had public insurance (OR, 0.64; 95% CI, 0.62-0.66), were uninsured (OR, 0.51; 95% CI, 0.46-0.56), were Hispanic (OR, 0.88; 95% CI, 0.85-0.91), lived > 5 miles from an SCC, or had a diagnosis other than leukemia and central nervous system tumors. Receiving care at an SCC was influenced by insurance, race/ethnicity, geography, and tumor type. Identifying the barriers associated with decreased SCC use is an important first step toward improving outcomes in AYA oncology patients. Cancer 2017;123:2516-23. © 2017 American Cancer Society.

Abstract A23: Fertility and Reproductive Health Resources Reported by Nurses Delivering Care for Minority Cancer Patients

Abstract Background: African American and Hispanic cancer patients face disparities in cancer care affecting quality of life (QoL) and other health related outcomes. Reproductive health (RH) topics such as risk of infertility due to treatment, contraception, and fertility preservation (FP) are among these QoL issues. The American Society of Clinical Oncology (ASCO) clinical practice guidelines suggest oncology care providers discuss potential fertility loss and refer adolescent and young adult (AYA) patients to reproductive specialists. Yet, recent studies of survivors and retrospective chart reviews show sub optimal rates of discussions and referrals. Less is known about the availability of FP and RH resources for racial/ethnic minority cancer patients. The Educating Nurses about Reproductive Health Issues in Cancer Healthcare (ENRICH) program seeks to improve nurses' communication skills regarding FP and RH issues with AYA oncology patients. In the current study, we explored availability of FP and RH resources reported by ENRICH participants providing care to African American or Hispanic cancer patients. Methods: Prior to starting the training program, applicants completed information about demographic characteristics, practice setting, and patient population, including an estimate of the proportion of their patients by race/ethnicity (0-25%, 26-50%, 51-75%, and 76-100%). Trainees also provided information about availability (yes/no) of FP and RH institutional resources including: established FP referral guidelines/procedures, reproductive endocrinologist and infertility specialist (REI) on staff, institutional partnership with an REI, RH material for staff, RH patient education material, and “other” RH resources. For the current analysis we used Chi-square tests to compare those who reported a patient population of &amp;lt;25% of African American and Hispanic patients compared to those who reported &amp;gt;26% patients population belonging to these particular racial/ethnic groups across all institutional FP and RH resources. Data on other racial/ethnic groups (White, Asian, Native Hawaiian, and American Indian) were collected, but did not provide sufficient variability with respect to the proportion of patients from those groups to conduct additional analyses. Results: A total of 104 nurses participated in the 2016 ENRICH training program cohort. The majority were Non-Hispanic (82%) and White (90%), and female (99%). On average, nurses reported 14 years of experience, more than half (59%) had at least a bachelor's degree and worked in academic institutions (66%). Of the participating nurses, 50% reported &amp;lt;25% of their patient population was African American; 50% reported their African American patient population was &amp;gt;26%. Approximately half (59%) served &amp;lt;25% Hispanic patients and 41% (n=43) identified &amp;gt;26% of their patients being Hispanic. Regardless of the proportion of minority patients served, reported availability of FP and RH resources was low to moderate. For example, among only 37% of nurses serving majority Hispanic patients work at institutions with an REI on staff and 27% of those serving majority African American patients had institutional partnerships with REIs. However, among those providing care for Hispanics, those with a greater proportion of Hispanic patients reported higher frequencies of having an established FP referral guidelines/procedures (38% vs 60%) and institutional partnership with an REI (25% vs. 49%) compared to those reporting a smaller proportion (p&amp;lt;0.05). Conclusion: Available data suggest that among nurses participating in the ENRICH program, availability of FP and RH resources for minority cancer patients are low to moderate. One of the ENRICH goals is to impact individual and workplace level changes to facilitate discussion of FP and RH. Future directions include surveying ENRICH participants' at 6 months and 1 year after course completion to assess if the program aided in increasing availability of FP and RH resources among those serving minority patients. Citation Format: Susan Vadaparampil, Meghan Bowman-Curci, Cathy Meade, Clement Gwede, Janella Hudson, Gwendolyn Quinn. Fertility and Reproductive Health Resources Reported by Nurses Delivering Care for Minority Cancer Patients. [abstract]. In: Proceedings of the Ninth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2016 Sep 25-28; Fort Lauderdale, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2017;26(2 Suppl):Abstract nr A23.

Palliative Care Involvement Is Associated with Less Intensive End-of-Life Care in Adolescent and Young Adult Oncology Patients

Adolescent and young adult oncology (AYAO) patients often receive intensive medical care and experience significant symptoms at the end of life (EOL). This study aimed to describe the characteristics of AYAO patients aged 15-26 years who died as inpatients in a hospital and to compare the illness and EOL experiences of AYAO patients who did and did not receive palliative care (PC). A standardized data extraction tool was used to collect information about demographics, treatment, terminal characteristics, and symptoms during the last month of life (LMOL) for 69 AYAO patients who died while hospitalized between 2008 and 2014. AYAO patients who died in the hospital required considerable medical and psychosocial care and experienced numerous symptoms during the LMOL. Compared to those patients who received no formal PC services, patients followed by the PC team were less likely to die in the intensive care unit (ICU) (38% vs. 68%, p = 0.024) and less likely to have been on a ventilator (34% vs. 63%, p = 0.028) during the LMOL. They also received fewer invasive medical procedures during the LMOL (median, 1 vs. 3 procedures, p = 0.009) and had a do not resuscitate order in place for a longer time before death (median, 6 vs. two days, p = 0.008). Involvement of the PC team was associated with the receipt of less intensive treatments and fewer deaths in the ICU.

Risk factors for opioid misuse in adolescents and young adults with focus on oncology setting.

Prescription opioid use has increased in recent decades. Although opioids provide effective pain control, their use may be associated with the risk of misuse. Opioid misuse (OM) is prevalent among adolescents and young adults (AYAs). Opioids are necessary to treat cancer-related pain; however, oncology patients are not immune to medication misuse. Research examining OM among AYAs with cancer is scarce. This article examines the risk factors described in the general adult and adolescent medication abuse literature and aims to provide recommendations for practice in the AYA oncology population. The following risk factors should be examined in AYA oncology patients to determine their relevance: age, sex, behavioral and academic problems, psychological conditions, and a history of illicit drug use/abuse. To maintain the delicate balance of providing adequate pain relief while protecting patients from the risk of OM, clinicians must consider potential risk factors, motivating factors, and individual behaviors. Placing these challenges in perspective, this review provides clinical considerations, recommendations, and intervention strategies for OM prevention in AYA oncology patients.

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.

Adolescent and young adult oncology (AYAO) patient enrollments onto National Cancer Institute (NCI)-supported trials from 2000 to 2010.

10058 Background: Lack of participation in clinical trials has been proposed as a key explanation for the survival deficit of AYAO patients. We compared the proportion of newly diagnosed AYAO patie...

Palliative care for adolescents and young adults with cancer.

Adolescents and young adults (AYAs) with cancer represent a unique and challenging group of patients with distinct developmental and psychosocial needs that may be unrecognized or unmet during their cancer experience. Palliative care refers to the total care of a patient, regardless of his or her disease status, and aims to improve quality of life by controlling symptoms and alleviating physical, social, psychological, and spiritual suffering. Integrating palliative care into standard oncology practice for AYAs is therefore valuable, if not imperative, in improving their overall cancer experience. In this review, we aimed to describe the scope, benefits, and challenges of palliative care for AYA oncology patients. We provide a broad impression of the existing literature describing or investigating palliative care in this population. Put together, the evidence suggests that palliative care is not only needed, but can also be critically beneficial to patients, families, and health care professionals alike. As we increase public and professional awareness of the needs and applications of palliative care for AYA patients with cancer, we will ultimately enable better psychosocial outcomes of the AYA patients and their larger communities.

Reproductive health in the adolescent and young adult cancer patient: an innovative training program for oncology nurses.

In 2008, approximately 69,200 adolescents and young adults (AYAs) were diagnosed with cancer, second only to heart disease for males in this age group. Despite recent guidelines from professional organizations and clinical research that AYA oncology patients want information about reproductive health topics and physician support for nurses to address these issues with patients, existing research finds few oncology nurses discuss this topic with patients due to barriers such as lack of training. This article describes an innovative eLearning training program, entitled Educating Nurses about Reproductive Issues in Cancer Healthcare. The threefold purpose of this article is to: (1) highlight major reproductive health concerns relevant to cancer patients, (2) describe the current status of reproductive health and oncology communication and the target audience for the training, and (3) present a systematic approach to curriculum development, including the content analysis and design stages as well as the utilization of feedback from a panel of experts. The resulting 10-week curriculum contains a broad-based approach to reproductive health communication aimed at creating individual- and practice-level change.

The need for reproductive and sexual health discussions with adolescent and young adult cancer patients

Reproductive health consistently ranks as one of the most important issues cited by adolescent and young adult (AYA) cancer survivors. Most literature on AYA cancer populations neglects broader reproductive health issues such as unintended pregnancies, contraception use and sexually transmitted infections, which, for cancer patients and survivors with compromised immune systems, can facilitate a multitude of future health problems. Lack of attention coupled with traditional risk-taking behaviors of AYAs poses a significant health risk to patients and survivors, particularly if fertility status is unknown or inaccurately assessed. AYA oncology patients and survivors are vulnerable to reproductive health complications that should be addressed prior to, during and after treatment; however, there are currently no tracking systems or evidence-based guidelines to discuss this subject with patients and survivors. Further research is needed to identify physician practices, AYA preferences and strategies for communication that can pave the way to establishing guidelines to discuss in oncology settings.

Primary care referral patterns for adolescent and young adult (AYA) cancer patients: A multistate study.

e16626 Background: Cancer patients in late adolescence and young adulthood may be referred for treatment to either pediatric or medical oncologists; research is exploring the impact of specialty and treatment regimen on outcomes. Recognizing the role of the initial referral decision by the primary care physician (PCP), we sought to determine physician and patient factors that influence referral patterns of AYA oncology patients. Methods: Surveys were mailed to 1129 PCPs: 50% pediatricians, 50% non-pediatricians with representative distribution of Family Medicine, Internal Medicine, General Practice, Emergency Medicine, Gynecology in North Carolina (NC) and Washington (WA). PCPs provided demographics, then reviewed hypothetical patient vignettes that independently varied 8 patient factors by fractional factorial design: age (13-22), gender, diagnosis, race, social support, insurance, transportation, patient preference for site of care, and denoted to whom (pediatric or non-pediatric oncologist) they would refer the patient. Results: Response rate was 33.2% in NC and 38.6% in WA, totaling 406 completed surveys. By univariate and multivariate analysis, the only significant PCP characteristic was specialty; referral to a pediatric oncologist was made in 60% of vignettes by pediatric PCPs and 36.5% of non-pediatrician PCPs (p-value < 0.0001). Regardless of PCP specialty, referral patterns shifted with patient age: 89% of 13 year olds (yo), 74% of 16 yo, 25% of 19 yo and 9% of 22 yo were referred to pediatric oncologists. Compared to germ cell tumors, acute lymphoblastic leukemia (OR = 4.29; 95% CI: 2.77 - 6.64), Hodgkin’s lymphoma (OR = 3.88; 95% CI: 2.57 - 5.84), and Ewing’s sarcoma (OR = 4.77; 95% CI; 3.10 - 7.35) were more likely to be referred to a pediatric provider. Those lacking private insurance were more likely referred to pediatric oncologists (OR 1.42; 95% CI 1.09-1.87). Conclusions: PCP specialty, patient age, type of cancer and insurance status were significant drivers of referral patterns for AYA cancer patients. Referrals to pediatric oncology drop dramatically over age 18. Because site of oncologic care can impact outcomes, awareness and education efforts regarding AYA cancer should include PCPs.

Adolescent and Young Adult Oncology Training for Health Professionals: A Position Statement

We outline here the essential elements of training for health care professionals who work with adolescent and young adult (AYA) patients with cancer. Research is emerging that a number of cancers manifest themselves differently in the AYA population, both in terms of biology and treatment response. In addition, there are a number of issues uniquely experienced by the AYA population that are critical for health care professionals working within AYA oncology (AYAO) to understand. The LIVESTRONG Young Adult Alliance, a Lance Armstrong Foundation program and a result of the Adolescent and Young Adult Oncology Progress Review Group cosponsored by the Lance Armstrong Foundation and the National Cancer Institute, assembled a group of experts representing relevant medical, psychosocial, and advocacy disciplines to create a blueprint for the training and development of health care professionals caring for AYA patients with cancer. The Alliance recommends that all health care professionals working in AYAO receive training that provides expertise in the following three critical areas: AYA-specific medical knowledge; care delivery specific to AYAs relative to pediatric and older adult populations; and competency in application and delivery of AYA-specific practical knowledge. These three areas should form the foundation for curricula and programs designed to train health care professionals caring for AYAO patients.