Adolescent And Young Adult Oncology Research Articles

Use of Communication Technology to Improve Clinical Trial Participation in Adolescents and Young Adults With Cancer: Consensus Statement From the Children's Oncology Group Adolescent and Young Adult Responsible Investigator Network.

Adolescents and young adults (AYAs; age 15-39 years) with cancer are under-represented in cancer clinical trials because of patient, provider, and institutional barriers. Health care technology is increasingly available to and highly used among AYAs and has the potential to improve cancer care delivery. The COVID-19 pandemic forced institutions to rapidly adopt novel approaches for enrollment and monitoring of patients on cancer clinical trials, many of which have the potential for improving AYA trial participation overall. This consensus statement from the Children's Oncology Group AYA Oncology Discipline Committee reviews opportunities to use technology to optimize AYA trial enrollment and study conduct, as well as considerations for widespread implementation of these practices. The use of remote patient eligibility screening, electronic informed consent, virtual tumor boards, remote study visits, and remote patient monitoring are recommended to increase AYA access to trials and decrease the burden of participation. Widespread adoption of these strategies will require new policies focusing on reimbursement for telehealth, license portability, facile communication between electronic health record systems and advanced safeguards to maintain patient privacy and security. Studies are needed to determine optimal approaches to further incorporate technology at every stage of the clinical trial process, from enrollment through study completion.

Stakeholder-informed conceptual framework for financial burden among adolescents and young adults with cancer.

Cancer and its treatments can result in substantial financial burden that may be especially distressing for adolescents and young adults (AYAs) since they are at a developmental stage focused on completing one's education and establishing independence. The purpose of this study was to develop a conceptual model of financial burden among AYA cancer patients to inform development of a financial burden measure. In-depth concept elicitation interviews were conducted with a purposive-selected stakeholder sample (36 AYAs and 36 AYA oncology health care providers). The constant comparative method was used to identify themes that illustrate AYAs' experience of financial burden by stakeholder groups. Eleven financial burden themes emerged: (1) impact of socioeconomic status and age; (2) significant cancer costs; (3) indirect cost "ripple effects"; (4) limited awareness of costs (adolescents); (5) emotional impact; (6) feeling overwhelmed navigating the health care system; (7) treatment decision modifications; (8) reducing spending; (9) coping strategies; (10) financial support; and (11) long-lasting impact. The conceptual model highlights the importance of material, psychosocial, and behavioral domains of financial burden with an emphasis on phase along the cancer continuum and developmental stage in the experience of financial burden for AYAs. Issues presented in the voice of AYA patients and providers highlight the profound impact of financial burden in this survivor group. The next step in this work will be to develop and test a patient-reported measure of financial burden among AYA cancer survivors.

Incremental benefit of interdisciplinary care in resource identification in an adolescent and young adult (AYA) oncology care model.

228 Background: Conventional health care models inadequately address the complex needs of adolescents and young adults (AYAs, defined as patients aged 15-39) with cancer, thus necessitating AYA programs. While grounded in the integration of medical and psychosocial care, the best AYA care model has not been identified. We sought to evaluate the comparative impact of one-on-one AYA clinic visits versus interdisciplinary team care on AYA-specific resource identification. Methods: We identified patients seen at the University of Wisconsin (UW) AYA Oncology program between 1/21/2021-5/13/2021. Patients in this program have a one-on-one clinic visit with an AYA physician followed four days later by case presentation at an AYA interdisciplinary team (IDT) meeting. We conducted retrospective chart review to evaluate novel resources identified by the AYA IDT meeting versus those previously identified during the one-on-one AYA clinic visit. Resources identified had to be novel from those already used by or identified for the patient. Results: We identified 32 patients seen by the UW AYA Oncology program. Prior to their AYA clinic visit, patients saw an average of 2.0 AYA-specific services (range 0-6, defined as those services listed in table). As seen in table, an average of 2.8 novel AYA-specific resources were identified for each patient (range 0-5) during the one-on-one AYA clinic visit. Following the AYA IDT meeting, additional novel resources were identified in 100% of patients, with an average of 2.6 additional resources identified per patient (range 1-7). Considering all resources identified by the AYA Oncology program (clinic visit + IDT), an average of 5.4 novel resources were identified per patient (range 2-10). AYA-Specific Resource Identification (n=32). Conclusions: Supporting the importance of dedicated AYA care models, we found that all patients in our study had novel AYA-specific resources identified by the UW AYA Oncology program. Resources identified by the physician-led one-on-one AYA clinic visit were not comprehensive as additional resources were identified for each patient at the AYA IDT meeting only four days later. These objective data support the critical importance of AYA interdisciplinary care as well as the use of an AYA IDT meeting model as a method to include interdisciplinary team care in AYA programs despite possible resource constraints.[Table: see text]

A call to action: Antiracist patient engagement in adolescent and young adult oncology research and advocacy.

Amidst the concurrent global crises of coronavirus disease 2019(COVID-19), uprisings against Anti-Black racism and police brutality, as well as anti-Asian racism and violence, the field of medicine found itself simultaneously called upon to respond as essential workers in the public health devastation of COVID-19, and as representatives of healthcare institutions wrought with the impacts of systemic racism. Clinicians, researchers, and advocates in adolescent and young adult (AYA) oncology, mustcome together in authentic activism to begin the work of creating structural change to advance antiracist approaches to patient engagement in AYA oncology research and advocacy. Critical review of existing practices is needed to ensure that ethical and effective research methods are employed when engaging with racial andethnic minority AYApatients with cancer, who may be particularly vulnerable and exploited in the current context.

Early Psychosocial Contact for Adolescents and Young Adults (AYAs) with Cancer: The Impact of the AYA Oncology Navigator.

This retrospective chart review assesses the impact of introduction of an adolescent young adult oncology navigator (AYAON) on first contact with oncology psychosocial services (OPS) for adolescents and young adults (AYAs) newly diagnosed with cancer. All AYAs newly diagnosed at a single adult oncology center between 17 and 29 years of age from July 2016 to July 2018 were reviewed. AYA contact with the AYAON was associated with an increase in contact with OPS. Following the introduction of the AYAON, there was a clinically significant decrease in the time to first OPS contact for newly diagnosed AYAs with cancer.

Are National Cancer Institute Cancer Centers (NCI-CC) providing adolescents and young adults (AYA) with cancer focused clinical services? A national survey.

1534 Background: AYA patients with cancer have inferior outcomes compared to their pediatric and adult counterparts. The NCI recommends they be treated by AYA focused healthcare professionals within an AYA oncology program. This survey captures the current landscape of AYA oncology care in the United States. Methods: An online survey was sent to 272 cancer centers in September 2020, in coordination with Teen Cancer America and included all clinically designated NCI-CC. The survey asked about the presence of an AYA program, types of patients, dedicated resources, clinical space, type of providers, associated support services, educational efforts, importance of AYA oncology care, and how well these services are provided. Results: In total, we received 93 responses, a 34% response rate, including 50 NCI centers, a 72% response rate. Only half (49%) of NCI-CC reported having an AYA program, and 70% were started in the past 5 years. One-third (32%) of centers reported plans to start an AYA program. Most programs included patient ages from ≥15 (56%) to ≤39 (63%) with a variety of cancers – most commonly hematologic (49%) and sarcoma (49%) and least commonly lung (36%), breast (38%), and head and neck cancer (38%). AYA programs are generally embedded in both adult and pediatric oncology services (63%). On average, cancer centers reported seeing 25-50 new AYA patients/month and 100-200 follow-up visits/month. Few programs reported a dedicated inpatient space (4%) or outpatient space (9%). Most NCI-CC have supportive services available for all oncology patients, but fewer of these services were dedicated specifically to AYA patients: navigators (92% vs. 71%), social work (98% vs. 57%), psycho-oncology (96% vs. 54%), dietician (98% vs. 24%), physical therapy (98% vs. 18%), chaplaincy (98% vs. 18%), and child life (83% vs. 26%). Other services available to the AYA population included sexual health (62%), academic support (62%), and career resources (36%). A minority of centers (30%) provided AYA training to their staff. A majority of NCI-CC felt AYA programs were important-very important (60%). They reported providing good-excellent overall AYA care (59%), but this dropped to 22% for sexual health and education of staff, which was relatively consistent across centers (Table). Conclusions: This survey is the first ever national survey to assess AYA oncology programs. Despite greater emphasis on the AYA cancer population, only half of NCI-CC report having a dedicated program, and areas of improvement include education of staff and sexual health services for patients. Self-report of providing good to excellent AYA care in specific areas.[Table: see text]

Health-Related Quality of Life Issues in Adolescents and Young Adults with Cancer: Discrepancies with the Perceptions of Health Care Professionals.

This study aimed to identify health-related quality of life (HRQoL) issues of relevance for adolescent and young adult (AYA) cancer patients, the perception of relevant HRQoL issues for AYA in generalby the health care professionals (HCP), and discrepancies between issues identified by AYAs and HCP. Dutch AYAs aged 18–35 years at the time of cancer diagnosis (N = 83) and HCPs (N = 34) involved in AYA oncology were invited to complete the Quality of Life for Cancer Survivors questionnaire. HCPs rated physical symptoms such as fatigue, appetite, pain, constipation, sleep disorders, nausea and neuropathy among AYA cancer patients significantly higher (i.e., more problems) than AYA cancer patients. AYA cancer patients rated overall physical health and quality of life, happiness, satisfaction, usefulness and support from others, all positively formulated questions, significantly higher (i.e., more positive) than HCPs. The most highly rated issues (negative and positive combined) for AYAs were: perceived support from others, distress about initial cancer diagnosis, distress for family and overall quality of life. HCPs identified distress about diagnosis, treatment, family and interference of illness with employment/study as the most problematic issues (all negative) for AYAs. Five of the ten most common issues listed by patients and HCPs were the same. Male AYAs, patients treated with curative intent and those with a partner rated positive HRQoL issues higher than their counterparts. The discrepancy between the perception of patients and HCPs illustrates the importance of patient involvement in organizing physical and psychosocial care.

A conceptual model of fertility concerns among adolescents and young adults with cancer.

For adolescents and young adults (AYAs), cancer-related fertility concerns (FC) are salient, disruptive, and complex. Clinical communication about FC and fertility preservation options are suboptimal, increasing patient distress. The purpose of this study is to construct a conceptual model of FC among AYAs with cancer to inform future measurement development. Concept elicitation interviews were conducted with a purposive sample of stakeholders: 36 AYAs (10 adolescents, 12 emerging adults, and 14 young adults), 36 AYA oncology health care providers, and 12 content experts in cancer-related infertility. The constant comparative method was used to identify themes and properties that illustrate AYAs' conceptualization and/or experience of FC. Thirteen themes characterized FC among AYAs with cancer, varying by stakeholder group and domain affiliations. Themes were grouped by four domains (e.g., affective, information, coping, and logistical), which organized the conceptual model. Affective experiences were further determined to be an important component within the other three domains. AYAs' fertility and fertility preservation experiences were shaped by communication factors and timing factors including placement along the lifespan/cancer continuum. AYA FC are characterized by uncertainty and confusion that may contribute to future decisional regret or magnify feelings of loss. Results add to previous research by examining individual, relational, and health care factors that fluctuate to inform fertility preservation perceptions and decision-making across the AYA age spectrum. Findings will be used to develop and test new self-report measures of FC among AYAs with cancer and survivors using classic and modern measurement theory approaches.

Adolescents and Young Adults Living With an Uncertain or Poor Cancer Prognosis: The "New" Lost Tribe.

Historically, adolescent and young adult (AYA) patients with cancer, diagnosed for the first time at age 15 through 39 years, have often been identified as a "lost tribe" without a medical "home"; neither pediatric nor adult oncology services were able to provide age-appropriate care to this specific group. Internationally, AYA care programs are being established to bridge the gap between the age-defined healthcare worlds and to address the specific needs of AYAs with cancer. However, AYA care programs mostly focus on improving cure rates and addressing survivorship issues, and direct less attention to the unique needs of those living with an uncertain and/or poor cancer prognosis. Additionally, palliative care services are typically poorly equipped to address the age-specific needs of this group. Given that increasingly more AYAs with an uncertain and/or poor cancer prognosis are gaining life years because of novel treatments, and sometimes even face the prospect of long-term disease control, AYA care programs should address the unique palliative care needs of this "new" lost tribe within AYA oncology. This report provides a definition and description of the AYA population living with an uncertain and/or poor cancer prognosis in terms of epidemiologic, clinical, and psychosocial characteristics and challenges, and provides perspectives for future research and care initiatives. It also highlights the need to comprehensively examine the experience of AYAs who are living with uncertain and/or poor cancer prognosis to adjust best care practices for this unique group.

The incidence and risk factors for venous thromboembolism in adolescent and young adult oncology patients

Venous thromboembolism (VTE) is a known complication among pediatric and adult cancer patients. Adolescent and young adult oncology (AYAO) patients have unique biological and physiological characteristics that make them distinct from other populations. Our objective was to study the VTE incidence, risk factors, and outcomes, which have been understudied in this population. A retrospective case-control study was conducted on AYAO participants with new or relapsed cancer and an imaging confirmed VTE from January 2011 to November 2016 at our institution. Eligible AYAO participants without a history of VTE were designated as controls and were randomly selected from our institution's tumor registry. Demographics, medical history, surgeries, central venous catheter (CVC) data, VTE diagnosis and treatment, relapses, and deaths were abstracted. Thirty-five VTE cases and 70 controls were included in this analysis. Eighty percent of cases had leukemia or lymphoma (vs. a solid tumor) compared to 58% of controls. The majority of VTEs (57%) were CVC associated, and more than 70% of cases had more than one CVC placed during their cancer treatment versus 34% of controls. Infection was associated with increased VTE risk (OR=6.35, 95% CI=2.30, 17.55, p<.0001). VTE cases had increased cancer relapse (23% vs. 10%) and mortality rates (29% vs. 16%) than controls. AYAO participants with a VTE were more likely to have leukemia or lymphoma, more than one CVC or infection. Further studies are needed to identify patients who would benefit from modifiable prevention measures, such as limiting to one CVC, preventing infections, or considering prophylactic anticoagulation for those with a liquid tumor.

Evaluation of a Positive Psychology Group Intervention in Nature for Young Cancer Survivors to Promote Well-Being and Post-Cancer Identity Development.

Purpose: Adolescent and young adult (AYA) cancer survivors (15-39 years) often struggle with their post-cancer identity. We developed an age-appropriate positive psychology group intervention with fellow AYA cancer survivors in a nature-rich environment. The aim of this study was to examine the needs and expectations of participants of this new, 1-week post-cancer identity intervention, and to evaluate their experiences to identify factors that contribute to the quality and impact of post-cancer mental health care interventions. Methods: This was a mixed-method exploratory pilot study evaluating a new, 1-week post-cancer identity intervention. The participants (n = 13) completed questionnaires at baseline measuring needs and expectations, and on the last day of the intervention and at 1-month follow-up, measuring experiences. Results: Participants' expectations to be supported in finding their post-cancer identity and receiving acknowledgment and recognition of their suffering in fellow AYAs were met. The intervention was perceived as positively contributing to post-cancer identity development (n = 11) and several aspects of well-being. Most appreciated elements of the intervention were peer support and the nature-rich environment on perceived well-being. Conclusion: The group-based positive psychology after care intervention in nature for AYA oncology was well received by participants and provided useful feedback for improvement of future editions. The intervention could offer support to AYA's in the promotion of their well-being and post-cancer identity development, but more research is needed to confirm this.

Care Experience, by Site of Care, for Adolescents and Young Adults With Cancer.

Most of the 77,000 adolescents and young adults (AYAs) 15-39 years of age diagnosed with cancer annually in the United States are treated at community rather than academic centers. Little is known about their healthcare experience. A cross-sectional, anonymous, online survey was conducted with a convenience sample of AYAs treated for cancer at US academic (n = 112) or community centers (n = 64). Clinical trials were offered more frequently to respondents treated at academic centers (26.8% v 7.8%; P = .005). Eighty percent of all those offered a clinical trial chose to enroll. Over three-fourths reported awareness of community-based or online AYA oncology support services; however, significantly more respondents from academic centers reported awareness of services provided by the institution itself (40.2% v 7.8%; P < .001). Significantly more respondents from academic centers reported receiving information relevant to their age group (41.1% v 15.6%; P < .001). Respondents treated at academic centers were significantly more satisfied with support, communication, and overall treatment. Odds of respondents treated at an academic center reporting that their healthcare team knew enough about AYAs were 3.12-fold higher than those treated at community centers (95% CI, 1.6 to 6.4; P = .002). Odds of overall satisfaction were significantly higher for respondents who reported that their healthcare team "knew enough about AYAs" (aOR, 9.7, 95% CI, 2.4 to 53.9; P = .003). Cancer treatment for AYAs at both academic and community centers can be optimized by improving healthcare providers' understanding of the key issues facing AYAs with cancer and by increasing AYA-specific institutional resources and support services.

Sexual health among adolescent and young adult cancer survivors: A scoping review from the Children's Oncology Group Adolescent and Young Adult Oncology Discipline Committee.

Sexual function is a vital aspect of quality of life among adolescent and young adult (AYA) (ages 15-39 years) cancer survivors. Sexual function encompasses physical, psychosocial, and developmental factors that contribute to sexual health, all of which may be negatively impacted by cancer and treatment. However, limited information is available to inform the care of AYA cancer survivors in this regard. This scoping review, conducted by the Children's Oncology Group AYA Oncology Discipline Committee, summarizes available literature regarding sexual function among AYA cancer survivors, including relevant psychosexual aspects of romantic relationships and body image. Results suggest that, overall, AYA cancer survivors experience a substantial burden of sexual dysfunction. Both physical and psychosocial sequelae influence survivors' sexual health. Interventions to support sexual health and psychosexual adjustment after cancer treatment are needed. Collaborations between the Children's Oncology Group and adult-focused cooperative groups within the National Cancer Institute's National Clinical Trials Network are warranted to advance prospective assessment of sexual dysfunction and test interventions to improve sexual health among AYA cancer survivors.

Adherence to cardiomyopathy screening guidelines among adolescent and young adult cancer survivors exposed to chest radiation and/or anthracyclines.

Cancer survivors are at risk for late effects from therapeutic exposures, including cardiovascular complications. To improve outcomes among adolescents and young adults (AYA) with cancer, the National Comprehensive Cancer Network (NCCN) released guidelines for screening services (based on the Children's Oncology Group Long-Term Follow-Up [LTFU] guidelines) for survivors of AYA cancer. To better understand survivorship care gaps, we conducted a baseline evaluation of cardiomyopathy screening among survivors of AYA cancers. Members of Kaiser Permanente Southern California diagnosed with cancer between ages 15 and 39 from 2000 to 2010 with at least 5-year survival after diagnosis who were exposed to chest radiation and/or anthracyclines were included. We calculated the Prevention Index ([PI], proportion of person-time covered by receipt of preventive services relative to the total person-time eligible) to evaluate adherence to recommended cardiomyopathy screenings based on the LTFU through 2016. Predictors for screening were evaluated in multivariable logistic regression. Among 479 survivors recommended for cardiomyopathy screening, 28 received at least one screening, and the mean PI was 2.38% (SD = 13.05%, median = 0.00%). Compared to stage I, survivors of stage II (odds ratio [OR] = 5.56 [1.05-29.46]) and stage III/IV cancer (OR = 6.08 [1.10-33.54]) were more likely to receive cardiomyopathy screening. Cardiomyopathy screening among survivors was low around the time when NCCN AYA oncology guidelines were released. Our study highlights significant room for improvement for adherence to cardiomyopathy screening recommendations among survivors of AYA cancer. Attention is needed to ensure that recommended cardiomyopathy screenings are met for better management of cardiomyopathy late effects.

Evaluation of Activation of a NCI National Clinical Trials Network (NCTN) Study S1826 for Hodgkin Lymphoma (HL) at Children's Oncology Group (COG) Institutions

Background: HL is an adolescent and young adult (AYA) cancer that lacks uniform approaches across medical and pediatric oncology. Differences include risk classification, chemotherapy backbone and use of radiation therapy. Heterogeneity in institutional programs and resources for AYAs adds to the gap in understanding why outcomes for AYA HL differ. In order to expedite equitable access to novel agents for AYA patients by medical and pediatric oncology providers, a NCTN facilitated trial for advanced stage HL was launched. The SWOG-led S1826 trial (NCT03907488), open to patients &amp;gt; 12 years of age, was activated in July 2019. We assessed barriers and facilitators to trial activation at COG institutions for this first in-kind approach. Methods: A web-based survey was distributed through the COG communications office to institutional principal investigators (PIs) of 216 institutions in North America. To achieve optimal response rates, the survey was distributed in four waves over a 6-week period. Branching logic differentiated questions for institutions that had opened or planned to open the trial vs. those who did not. Topics included institutional characteristics, joint partnership with medical oncologists to activate AYA trials, and specific barriers for opening this trial. Descriptive statistics were calculated using SAS v.7.1. Results: The response rate was 73% with 158 unique responses among 216 COG institutions queried. Among responding institutions 24% were freestanding children's hospitals; 18% were NCI-designated cancer centers. 55% of respondents indicated a known affiliation with another NCTN cooperative group other than COG. 31% indicated prior experience in participating in a non-COG led NCTN trial for other diseases. 42% of institutions reported a central trials infrastructure for joint pediatric and medical oncology trials. 44% indicated use of the central IRB mechanism, and 4% used a provincial IRB. While 40% had an established AYA oncology program, 30% reported regular lymphoma tumor boards with medical oncology; 8% indicated the ability to see AYA lymphoma patients in a joint pediatric and medical oncology clinic. The trial is open at 79/158 (50%) COG institutions to date and an additional 56 indicated future intent to open the trial. Among 135 COG institutions with open or intent-to-open status, 73% of institutional principal investigator (PI) were pediatric oncologists, 24% were medical oncologists and 4% were joint PIs. PI determination was based on: enrolling as a COG-only site (57%); institutional policy (5%); a discussion among investigators (23%); or other factors (14%). These were categorized as: more resources or anticipated patients in medical oncology (n=4); the trial being opened in medical oncology before pediatrics (n=11); being open in pediatrics before medical oncology (n=2); no interface for joint studies (n=1). Among the 14% of respondents who indicated the trial would not be opened, a competing trial was the reason in 35%. Other reasons included: lack of awareness of the trial, concerns about study design or chemotherapy backbone, lack of easily accessible protocol documents, anticipated lack of accrual, concerns around funding support, challenges with regulatory support, data management, or institutional process for medical and pediatric joint trials. Respondents' recommendations for facilitating activation of AYA intergroup studies include needs for: increased resources and funding; guidance on communication and navigation with medical oncologists for managing joint trials; institutional infrastructure for AYA trials; clearer rationale for a change in the chemotherapy backbone relative to prior COG studies; accessibility and consistency of protocol study naming conventions and protocol documents (i.e. therapy roadmap) on the COG electronic site. Conclusions: Successful implementation of AYA trials is germane to early access to novel agents for younger adolescents. Overall, COG institutions indicate a high level of endorsement for a NCTN AYA trial for HL with 85% indicating activation completed or planned. This survey suggests that AYA trials can be implemented successfully in a network but require education, early communication between pediatric and medical oncologists, and flexible infrastructure for all group participants. (Funding: U10CA180886, U10CA180888, and UG1CA233230) Disclosures Parsons: Seattle Genetics: Consultancy. Herrera:Bristol Myers Squibb: Consultancy, Other: Travel, Accomodations, Expenses, Research Funding; Merck: Consultancy, Research Funding; Genentech, Inc./F. Hoffmann-La Roche Ltd: Consultancy, Research Funding; Gilead Sciences: Consultancy, Research Funding; Seattle Genetics: Consultancy, Research Funding; Immune Design: Research Funding; AstraZeneca: Research Funding; Karyopharm: Consultancy; Pharmacyclics: Research Funding. Friedberg:Acerta Pharma - A member of the AstraZeneca Group, Bayer HealthCare Pharmaceuticals.: Other; Astellas: Consultancy; Kite Pharmaceuticals: Research Funding; Bayer: Consultancy; Seattle Genetics: Research Funding; Roche: Other: Travel expenses; Portola Pharmaceuticals: Consultancy.

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.

Optimizing the measurement of health-related quality of life in adolescents and young adults with cancer.

To date, the health‐related quality of life experiences of adolescents and young adults (AYA) with cancer have been inconsistently and incompletely captured by existing patient‐reported outcome (PRO) measures. The National Institutes of Health Patient‐Reported Outcomes Measurement Information System (PROMIS) represents the state of the art for measurement science of PROs and provides an optimal approach for addressing these measurement challenges and catalyzing future patient‐centered research in AYA oncology.

To be or not to be in the social media arena? The perspective of healthcare providers working within adolescent and young adult oncology in Switzerland.

Given that social media is quickly penetrating clinical practice, it is essential to explore how these technologies can be used to improve patient-centered care. This is particularly important for healthcare professionals caring for adolescents and young adults (AYA), amid whom the use of social media is nearly universal and whose medical and psychosocial needs are often underestimated by the pediatric or adult oncology settings in which they are treated. To examine the perspectives of various medical professionals on the emerging role of social media in AYA oncology. Three focus groups were performed with Swiss healthcare professionals involved in the care of AYA patients with cancer. The focus groups were analyzed using thematic coding. Healthcare professionals caring for AYA cancer patients in Switzerland are reluctant to step into the social media sphere because they find it difficult to navigate professional boundaries in an unfamiliar space where different contexts collapse. Nurses and younger healthcare professionals who tend to have a more intimate relationship with AYA, often lack virtual mentorship to know how to maintain online professionalism. Adolescents and young adults cancer-related social media presence was unknown to our participants which resulted in missed occasions to inform, educate and care for this often underserved population of cancer patients. More practical guidance is needed to help healthcare professionals with how to integrate social media into clinical practice. Setting up fruitful collaborations between medical institutions and existing AYA support groups online might be the best way forward.

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).

A System for Classifying Cancers Diagnosed in Adolescents and Young Adults

Background: Cancers in adolescents and young adults (AYAs) form a distribution distinct from those in children and older adults. As the increasing interest in AYA oncology has developed, the current classification system of neoplasms in AYAs has become outdated. Based on emerging knowledge in cancer biology and clinical advances, a new classification is proposed. Methods: The new system is based on morphologies and primary sites in the population aged 15 to 39 years. It accommodates information in WHO Blue Books on numerous groups of neoplasms and the recent update of the International Classification of Diseases for Oncology. Data from the Surveillance, Epidemiology and End Results (SEER) program of the US National Cancer Institute illustrate the proposed classification. Findings: The distinct distribution of cancers in AYAs reflects the inclusion of benign/borderline tumors of the CNS, in situ lesions for various carcinomas and neuroendocrine tumors in several locations. Diseases with striking increases in incidence, peculiar to AYAs in the SEER dataset, notably neuroendocrine tumors of the appendix and a re-named variant of carcinoma of the thyroid, are highlighted. New categories have been created to address Blood and Lymphatic Vessel Tumors and Nerve Sheath Tumors. Less than 0·5% of all cancers were designated as Unspecified Malignant Neoplasms Except CNS and fewer than 0·001% were not classifiable in the SEER data. Interpretation: The proposed classification system addresses the choice of the age range 15 to 39 years for AYAs and affords contrast with the previous classification as well as cancers in children and older adults. Characteristics which distinguish neoplasia in AYAs are emphasized. The ultimate goal of the new system is to improve cancer registration, diagnosis, treatment and health-related outcomes in this age group through standardized groupings of primary site and histology among different populations and over time. Funding Statement: The authors state: No external funding. Declaration of Interests: The authors have no conflicts of interests to declare. Ethics Approval Statement: Not required.