The Lived Experience of Young Adult Cancer Survivors after Treatment: A Qualitative Study.

OBJECTIVE: The purpose of this qualitative study was to compare the lived experiences among extended (one year or less post-treatment) and long-term (three years or more post-treatment) young adult (YA) cancer survivors (ages 18-39 years old). METHODS: Two trained researchers conducted semi-structured interviews inquiring about the overall lived experience of N = 24 YA cancer survivors (n = 12 extended and n = 12 long-term). The same two researchers independently completed line-by-line coding and thematic content analysis. RESULTS: Interviews lasted an average of 41 min and revealed common themes of symptoms, psychosocial concerns, coping, and changes in health behaviors (e.g., nutrition and physical activity). All participants discussed symptoms impairing their quality of life and affecting their fear of recurrence. Specific psychosocial concerns among extended survivors were appearance-related (e.g., hair loss, weight gain) whereas concerns among long-term survivors included job loss, fertility, and financial stress. Coping strategies described by extended survivors were often distraction-based (e.g., watching television to "escape"), while long-term survivors described more active coping strategies (e.g., yoga, meditation, and seeking support from family and friends). Most survivors reflected on limited physical activity or unhealthy eating during treatment; however, nearly all declared healthy eating and physical activity post-treatment to improve well-being. CONCLUSIONS: YA cancer survivors report differing symptoms, psychosocial concerns, and coping strategies across time since treatment. While survivors reported challenges with physical activity and nutrition during treatment, nearly all emphasized the importance of these health behaviors post-treatment. Thus, health behavior interventions could represent a preferred approach to address post-treatment challenges and improve quality of life for YA survivors.

Anti-PD-1 therapy in advanced sarcomas: is cutaneous primary site a stronger predictor of response than histologic subtype?

BACKGROUND: Immune checkpoint inhibitors (ICIs) have shown modest antitumor activity in unselected advanced sarcomas. Histology driven approach to patient selection is the current standard for off-label anti-programmed cell death 1 (PD1) immunotherapy use. METHODS: We retrospectively reviewed the clinical characteristics and outcomes of patients with advanced sarcoma who were treated with off label anti-PD1 immunotherapy at our center. RESULTS: A total of 84 patients with 25 histological subtypes were included. Nineteen patients (23%) had a cutaneous primary tumor site. Eighteen patients (21%) were classified as having clinical benefit, including 1 patient with complete response, 14 with partial response, and 3 with stable disease lasting over 6 months with previously progressive disease. Cutaneous primary site location was associated with higher clinical benefit rate (58% vs. 11%, p < 0.001), longer median PFS (8.6 vs. 2.5 months, p = 0.003) and OS (19.0 vs. 9.2 months, p = 0.011), compared to non-cutaneous primary. Patients with histological subtypes that pembrolizumab is indicated per current National Comprehensive Cancer Network guidelines had modestly higher rate of clinical benefit versus other histologies, however, the difference was statistically insignificant (29% vs. 15%, p = 0.182) and no statistically significant difference in PFS or OS was observed between these groups. Immune-related adverse events were more frequently seen among patients with clinical benefit (72% vs. 35%, p = 0.007). CONCLUSIONS: Anti-PD1-based immunotherapy is highly efficacious in advanced sarcomas of cutaneous primary site. Cutaneous primary site location is a stronger predictor of ICI response than histologic subtype and should be accounted for in treatment guidelines and clinical trial design.

Cannabis consumption in young adults with cancer: descriptive study.

OBJECTIVE: In the USA, the increase in state-sanctioned medical and recreational cannabis consumption means more young adults (YA) with cancer are using cannabis. Data and information are needed to characterise this use and frame much needed discussions about the role of cannabis in cancer care. To that end, this study's objective was to describe consumption of cannabis in YA with cancer. METHODS: Four hundred seventy-six patients with cancer ages 18-39 years at a large comprehensive cancer centre responded to a survey about their cannabis consumption. The survey was administered online between July 2019 and June 2020, and respondents were anonymous. RESULTS: Fifty-two per cent (n=247) of respondents endorsed use within the last year; of these, half reported using cannabis prior to their diagnosis. Consumption was about equally distributed between smoking/inhalation and eating/drinking cannabis products. Seventy-five per cent of consumers used cannabis at least weekly. Top five primary reasons for use were pain, anxiety, nausea, sleep and recreation. More frequent consumption was associated with greater perceived improvement in certain symptoms. Cannabis products tended to be sourced from friends and family and information from non-medical sources. Most YA reported being comfortable discussing their consumption with providers. CONCLUSIONS: Many YA are using cannabis frequently to manage their cancer-related and treatment-related symptoms. Findings support the need for providers to consider cannabis use in treatment planning and symptom management with YA. Findings should help frame patient and provider discussions and herald much needed research on the effect of cannabis consumption on patient outcomes.

"It's Kind of Complicated": A Qualitative Exploration of Perceived Social Support in Young Adult and Young Adult Lesbian, Gay, Bisexual, Transgender, and/or Queer Cancer Survivors.

Purpose: This qualitative secondary analysis describes the perceived importance of familial, peer, and health system social support for an understudied group of cancer survivors: young adults (YAs), including those who are lesbian, gay, bisexual, transgender, and/or queer (LGBTQ). Methods: Semistructured interviews were conducted with YA cancer survivors as part of a study of social support networks and interactions. Team members conducted content analysis of interview transcripts; coding decisions were reviewed and discussed among the research team. Descriptions of social support were ultimately organized around family, peer, and health care system support. Results: Twelve YA survivors recruited using two National Cancer Institute (NCI)-designated Comprehensive Cancer Centers and social media participated between August 2019 and May 2020. Survivors averaged 28.2 years old. Half of survivors self-identified as female; four survivors were LGBTQ. Participants described both the positives of social support, as well as barriers to meeting support needs, within the following three levels: familial, peer, and health care providers or system. Conclusion: YA survivors have needs that are often addressed by their families, peers, and the health care system. However, barriers such as complex relationship history and lack of targeted/tailored support programs can prevent survivors from receiving adequate support. The growing diversity and intersectionality represented in the YA population call for targeted support and training by the health care system to sufficiently support this population.

Clinical Trial Availability by Location for 1000 Simulated AYA Patients.

Purpose: Adolescent and young adult (AYA) oncology patients are less likely to enroll in clinical trials than pediatric patients. After two decades of effort to improve enrollments, challenges remain. We sought to explore where phase II and phase III trials are available for an AYA cohort. Methods: Based on the epidemiology of AYA cancers and outcomes, we assembled a simulated data set of 1000 patients (AYAsims). Available phase II and phase III trials were matched to diseases and treatment setting (relapsed or newly diagnosed) and characterized by sponsor (industry, National Clinical Trials Network [NCTN], investigator initiated) and location (Moffitt Cancer Center [MCC], community or pediatric). Results: The majority of AYAsims had potential first line (64.4%) and/or relapsed (68.1%) trials. The majority of these opportunities were industry-sponsored trials available at MCC. Phase II trials for relapsed cancer were most often at the MCC and more likely to be investigator-initiated trials. Trial availability for histologies varied widely, likely reflective of the overall epidemiology of cancers beyond the AYA age range. Pediatric hospitals offered trials for select cancers but had a trial portfolio that matched the fewest number of AYAsims. Conclusions: In general, newly diagnosed AYA patients have trial enrollment opportunities in both the community and comprehensive cancer center setting with select diagnoses having more trials in pediatric hospitals. Relapsed AYA patients have the most trial opportunities at a comprehensive cancer center. A facile system that navigates patients across health systems would maximize potential AYA trial enrollments.

Sarcoma as a Model for Adolescent and Young Adult Care.

Sarcomas occur across all ages and are relatively abundant in the adolescent and young adult populations compared with older adults. Because of an overall rarity combined with a broad diversity of diagnoses, expertise is often concentrated in comprehensive cancer centers. The sarcoma model of care is an excellent model for overall adolescent and young adult care. We summarize some of the natural advantages of the field for developing adolescent and young adult programs, review management and referral touchpoints, and summarize recent biologic and clinical trial insights that have affected sarcoma management recently.

Provider perceptions' of a patient navigator for adolescents and young adults with cancer.

PURPOSE: Healthcare providers (HCPs) and other staff at a comprehensive Cancer Center were interviewed on how to best implement a patient navigator position when working with adolescents and young adults (AYA) with cancer. Research objectives included assessing staff perceptions of (a) barriers to optimal care for AYA, (b) roles and responsibilities for a patient navigator, and (c) training needed for future patient navigators. METHODS: Semi-structured interviews were conducted with 17 staff members providing care to AYA. Verbatim transcripts were hand-coded using inductive content analysis. RESULTS: Roles and responsibilities of a patient navigator were described as needing to coordinate services, be knowledgeable of resources inside and outside the Cancer Center, provide emotional support, advocate for AYA, assist with financial and insurance issues, and serving as the first point of contact. CONCLUSIONS: Staff serving AYA reported the desired roles and training they wished a patient navigator to possess. This study contributes to the literature by conducting stakeholder assessment of the goals and roles of an AYA patient navigator (PN). PN positions should be adapted to the workflow and ethos of the institution.

Higher than reported adolescent and young adult clinical trial enrollment during the "Golden Age" of melanoma clinical trials.

Clinical trial enrollments in adolescents and young adults (AYA) with cancer have historically been lower than those in pediatric and older adult populations. We sought to examine therapeutic trial enrollment rates at our cancer center. We performed a retrospective evaluation of AYA patients treated before and after the first checkpoint inhibitor trial opened at our cancer center in 2007. We examined gender, stage at presentation and insurance status in terms of trial enrollment. We compared the trial participation rate of AYA patients with that of older adults. In this adult facility, 12.7% (1,831) of total patients were between age 15 and 39. Overall therapeutic clinical trial rate was 17.6% which increased to 19.8% since 2007. Both nodal disease or metastatic disease at presentation was associated with increasing odds of trial enrollment (OR = 5.36 and P < 0.001 for nodal disease and OR = 7.96 and P < 0.001 for metastatic disease). There was a nonstatistically significant trend toward improved 3-year overall survival in the AYA patients with advanced presentation that enrolled on clinical trials compared with those not enrolled on trials since 2007. AYA clinical trial enrollment at a comprehensive care center melanoma program was higher than reported in the literature overall for AYA patients. This 1,831 patient cohort may provide a foundation for more detailed investigation toward quantifying the effects of clinical trial enrollment in terms of age-specific benefits and toxicities for AYA patients with malignancies that have their peak incidence in older adults.

Adolescent and Young Adult Patients with Cancer: Perceptions of Care.

BACKGROUND: Adolescent and young adults with cancer (AYACs) face unique medical, psychosocial, and supportive care needs. The purpose of this study was to identify AYACs perceptions and expectations of cancer care services on and off treatment. METHODS: Semistructured interviews were conducted with 23 AYACs aged 19-38 years (13 on and 10 off treatment), who were receiving care at a comprehensive cancer center. Verbatim transcripts were created from audiotaped interviews and hand coded using inductive content analysis methodology. RESULTS: Perceptions of optimal care were reported by AYACs through two main themes as follows: perceived barriers and facilitators during treatment. Within each main theme were three subthemes, including perceived facilitators reported as the provision of social support, the website and patient portal, and the educational information provided by the cancer center. Younger female AYACs (age 19-31) on active treatment reported perceived barriers to optimal care related to the management of physical and mental health symptoms, while older patients (age 32 and up) on active treatment endorsed a fear of cancer returning. The third perceived barrier equally endorsed by patients both on and off treatment and across age ranges included limited assistance with financial issues. CONCLUSIONS: AYACs reported perceived barriers and facilitators to optimal care. Implications for these findings are discussed in the context of the importance of adding a patient navigator to the AYACs care team.

Current state of pediatric sarcoma biology and opportunities for future discovery: A report from the sarcoma translational research workshop.

Sarcomas are a rare subgroup of pediatric cancers comprised of a variety of bone and soft-tissue tumors. While significant advances have been made in improving outcomes of patients with localized pediatric sarcomas since the addition of systemic chemotherapy to local control many decades ago, outcomes for patients with metastatic and relapsed sarcoma remain poor with few novel therapeutics identified to date. With the advent of new technologies to study cancer genomes, transcriptomes and epigenomes, our understanding of sarcoma biology has improved tremendously in a relatively short period of time. However, much remains to be accomplished in this arena especially with regard to translating all of this new knowledge to the bedside. To this end, a meeting was convened in Philadelphia, PA, on April 18, 2015 sponsored by the QuadW foundation, Children's Oncology Group and CureSearch for Children's Cancer that brought together sarcoma clinicians and scientists from North America to review the current state of pediatric sarcoma biology and ongoing/planned genomics based clinical trials in an effort to identify and bridge knowledge gaps that continue to exist at present. At the conclusion of the workshop, three key objectives that would significantly further our understanding of sarcoma were identified and a proposal was put forward to develop an all-encompassing pediatric sarcoma biology protocol that would address these specific needs. This review summarizes the proceedings of the workshop.

Pediatric phase I trial of oral sorafenib and topotecan in refractory or recurrent pediatric solid malignancies.

Targeted kinase inhibitors and camptothecins have shown preclinical and clinical activity in several cancers. This trial evaluated the maximum tolerated dose (MTD) and dose-limiting toxicities of sorafenib and topotecan administered orally in pediatric patients with relapsed solid tumors. Sorafenib was administered twice daily and topotecan once daily on days 1-5 and 8-12 of each 28-day course. The study utilized a standard 3 + 3 dose escalation design. Three dose levels (DL) were evaluated: (1) sorafenib 150 mg/m(2) and topotecan 1 mg/m(2) ; (2) sorafenib 150 mg/m(2) and topotecan 1.4 mg/m(2) ; and (3) sorafenib 200 mg/m(2) and topotecan 1.4 mg/m(2) . Pharmacokinetics were ascertained and treatment response assessed. Thirteen patients were enrolled. DL2 was the determined MTD. Grade 4 thrombocytopenia delaying therapy for >7 days was observed in one of six patients on DL2, and grade 4 neutropenia that delayed therapy in two of three patients on DL3. A patient with preexisting cardiac failure controlled with medication developed a transient drop in the left ventricular ejection fraction that improved when sorafenib was withheld. Sorafenib exposure with or without topotecan was comparable, and the concentration-time profiles for topotecan alone and in combination with sorafenib were similar. One objective response was noted in a patient with fibromatosis. We determined MTD to be sorafenib 150 mg/m(2) twice daily orally on days 1-28 combined with topotecan 1.4 mg/m(2) once daily on days 1-5 and 8-12. While these doses are 1 DL below the MTD of the agents individually, pharmacokinetic studies suggested adequate drug exposure without drug interactions. The combination had limited activity in the population studied.