Background Lesbian, gay, bisexual, transgender, and queer (LGBTQ) individuals with cancer have specific and unique health issues and needs. Reports persist of inequalities in the care provided for these patients, making it important to assess the attitudes and knowledge of LGBTQ needs among those who provide care. Materials and methods The European Society for Medical Oncology (ESMO) and the European Society for Paediatric Oncology (SIOP Europe) Adolescents and Young Adults Working Group designed this survey comprising 67 questions covering demographics, knowledge, and education of LGBTQ health needs, and attitudes regarding LGBTQ patients with cancer. Results Among the 672 respondents, a majority do not ask about sexual orientation and gender identity during first visit (64% and 58%, respectively). Only a minority of the respondents considered themselves well informed regarding gay/lesbian and transgender patients’ health (44% and 25%, respectively) and psychosocial needs (34%). There was high interest in receiving education regarding the unique health needs of LGBTQ patients (73%). Conclusions Survey respondents indicated a willingness to provide care to LGBTQ patients, but a lack of confidence in the knowledge of the health issues and needs of LGBTQ individuals. Lack of training provided in medical schools and postgraduate training programmes and strong interest for additional education on these issues were reported.

Background: Cancer epidemiology is unique in adolescents and young adults (AYAs; aged 15-39 years). The European Society for Medical Oncology/European Society for Paediatric Oncology (ESMO/SIOPE) AYA Working Group aims to describe the burden of cancers in AYAs in Europe and across European Union (EU) countries. Patients and methods: We used data available on the Global Cancer Observatory. We retrieved crude and agestandardised (World Standard Population) incidence and mortality rates. We reported about AYA cancer burden in Europe and between 28 EU member states. We described incidence and mortality for all cancers and for the 13 cancers most relevant to the AYA population. Results: Incidence and mortality varied widely between countries with the highest mortality observed in Eastern EU countries. Cancers of the female breast, thyroid and male testis were the most common cancers across countries followed by melanoma of skin and cancers of the cervix. Variations in cancer incidence rates across different populations may reflect different distribution of risk factors, variations in the implementation or uptake of screening as well as overdiagnosis. AYA cancer mortality disparities may be due to variation in early-stage diagnoses, different public education and awareness of cancer symptoms, different degrees of access or availability of treatment. Conclusions: Our results highlight the future health care needs and requirements for AYA-specialised services to ensure a homogeneous treatment across different countries as well as the urgency for preventive initiatives that can mitigate the increasing burden.

Sexual and gender minorities [lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ)] is a diverse group that is at risk for receiving disparate cancer care. A survey of the European Society for Medical Oncology (ESMO) and the European Society for Paediatric Oncology (SIOP Europe) members was conducted, to identify challenges in attitude and knowledge, as well as interest for further education about LGBTQ patients with cancer. A link to an online survey was sent to the members of ESMO and SIOP Europe to measure attitudes and knowledge about LGBTQ health, and clinical practices. Results were analyzed by using descriptive analyses. Among the 672 respondents, there was high agreement regarding the importance of knowing the gender identity as perceived by the patient (75%) and sex at birth (78%), which was contrasted by lower agreement (54%) regarding the importance of knowing sexual orientation. However, the majority doesn’t ask about sexual orientation and gender identity during first visit (64% and 58% respectively). Only a minority of the respondents considered themselves well informed regarding gays/lesbians and transgender patients’ health (44 and 25% respectively), and psychosocial needs (34%). Questions about cancer risk in relation to sexual orientation and in those who identify themselves as a different gender compared to risk estimated based on their gender at birth yielded mixed responses. There was high interest in receiving education regarding the unique health needs of LGBTQ patients (73%), which was considered as a core skill for all cancer specialists by 72%. For most of the questions no significant differences were noted among those who defined themselves as heterosexual, gays/lesbians or bisexual. This is the largest, to our knowledge, and the first among European specialists survey, addressing attitude, knowledge and interest for further education needs about LGBTQ patients with cancer. A lack in knowledge about clinical and psychosocial issues was revealed, as well as high interest in receiving LGBTQ-specific education and clinical practice guidelines.

It is well recognised that adolescents and young adults (AYA) with cancer have inequitable access to oncology services that provide expert cancer care and consider their unique needs. Subsequently, survival gains in this patient population have improved only modestly compared with older adults and children with cancer. In 2015, the European Society for Medical Oncology (ESMO) and the European Society for Paediatric Oncology (SIOPE) established the joint Cancer in AYA Working Group in order to increase awareness among adult and paediatric oncology communities, enhance knowledge on specific issues in AYA and ultimately improve the standard of care for AYA with cancer across Europe. This manuscript reflects the position of this working group regarding current AYA cancer care, the challenges to be addressed and possible solutions. Key challenges include the lack of specific biological understanding of AYA cancers, the lack of access to specialised centres with age-appropriate multidisciplinary care and the lack of available clinical trials with novel therapeutics. Key recommendations include diversifying interprofessional cooperation in AYA care and specific measures to improve trial accrual, including centralising care where that is the best means to achieve trial accrual. This defines a common vision that can lead to improved outcomes for AYA with cancer in Europe.

Background: Adolescents and young adults (AYA) with cancer require dedicated management that encompasses both adult and paediatric cancer services. Following the European survey, the European Society for Medical Oncology (ESMO), the European Society for Paediatric Oncology (SIOPE) and the Asian Society for Paediatric Oncology (SIOP-ASIA) ran a tailored one to identify availability, access and disparities in AYA cancer care across Asia. Methods: A link to an online survey was sent to healthcare professionals (HCPs) in Asia interested in AYA cancer care. Questions covered the demographics and training of HCPs, definition of AYA, availability and access to AYA-specialised centres, trends, habits, disparities and challenges encountered in the management of cancer in AYA. Results: In total, 268 responses were received from 22 Asian countries. Among respondents, 22% reported being trained to treat both adults and children. There was a striking variation in the definition of AYA (median lower age 15 years, median higher age 29 years). The majority of the respondents did not have access to specialised cancer services (78%) and were not aware of any research initiatives or clinical trials for AYA (73%). Over two-thirds were able to refer their patients for psychological (69%) and/or nutrition support (69%); however, more than half did not have access to a social worker (60%), education mentor (55%), or age-specific nurse specialist (63%). Most advised their patients on a healthy lifestyle after cancer treatment; nevertheless, 46% did not ask their patients regarding smokeless tobacco habits and only 49% referred smokers to a smoking cessation service. Furthermore, 29% did not promote HPV vaccination for girls and 17% did not promote HBV vaccination for high-risk individuals. In terms of funding, 69% reported governmental insurance coverage, albeit 65% reported also at least partially self-paid. Almost half reported treatment non-compliance or abandonment (47%), attributed to financial and family problems (72%), loss to follow-up (74%) and seeking alternative treatments (77%). Conclusions: Lack of access to and suboptimal delivery of AYA-specialised cancer care services pose major challenges across Asia. Legal entity responsible for the study: European Society for Medical Oncology (ESMO). Funding: European Society for Medical Oncology (ESMO). Disclosure: S. Bielack: Fees for participation at Advisory boards: Pfizer, Bayer, Lilly, Novartis, Isofol, Sensorion. F.A. Peccatori: Fees: Roche, AstraZeneca, Clovis, Ipsen. D. Stark: Research grant income in AYA cancer: The National Institute for Health Research, Cancer Research UK, the Teenage Cancer Trust; Research support: Pharmamar Inc and AstraZeneca Inc. All other authors have declared no conflicts of interest.

AIMS:Epithelioid sarcoma is a soft tissue sarcoma associated with a high rate of local recurrence after wide resection and high incidence of distant metastasis. Little is known about the clinical course and response to systemic treatments in epithelioid sarcoma patients. We carried out a retrospective analysis of clinical data from epithelioid sarcoma patients to provide a reference for the design of future epithelioid sarcoma-specific studies. PATIENTS AND METHODS:Data from patients with epithelioid sarcoma entered in prospective multi-sarcoma phase II/III trials were pooled: EORTC trial 62012 (doxorubicin versus doxorubicin/ifosfamide), 62043 (pazopanib), 62072 (pazopanib versus placebo) and 62091 (doxorubicin versus trabectedin). Patients had either a local or a centrally confirmed diagnosis of epithelioid sarcoma, had inoperable/metastatic disease at study entry and were eligible for the according trial. Response was assessed according to RECIST 1.1. Progression-free survival (PFS) and overall survival were calculated from date of entry. RESULTS:Among 976 patients with advanced sarcomas, 27 epithelioid sarcoma patients (2.8%) were eligible for the analysis (17 men, median age at diagnosis 50 years, range 19-72). Eighteen (66.7%) received chemotherapy as first-line treatment (five doxorubicin, eight doxorubicin/ifosfamide, two pazopanib, three trabectedin) and nine (33.3%) received pazopanib as second line or later. The primary tumour was located in the lower extremity (n = 8; 29.6%), upper extremity (n = 5; 18.5%), retro/intra-abdominal (n = 4; 14.8%) and in other locations (n = 10; 37.0%). At entry, metastases were mainly found in lung (n = 17; 63%), lymph nodes (n = 9; 33.3%), bone (n = 8; 29.6%) and soft tissue (n = 7; 25.9%). The best response for first-line patients was four partial responses (22.2%), 10 stable disease (55.6%) and four progressive disease (22.2%). In subsequent lines, pazopanib achieved one partial response (11.1%), four stable disease (44.4%) and four progressive disease (44.4%). All patients but one progressed on treatment. The median PFS and overall survival were 3.8 (95% confidence interval 2.2-4.8) and 10.8 months (95% confidence interval 8.1-21.3), respectively. Five patients were still alive at the time of the according trial analysis. CONCLUSION:With all limitations of such a rare disease and small data set, objective response and survival outcomes are similar in epithelioid sarcoma to non-selected sarcoma populations. The clinical testing of novel systemic treatments for epithelioid sarcoma remains an unmet medical need and a high priority.

INTRODUCTION:Women diagnosed with cancer and facing potentially sterilising cancer treatment have to make time-pressured decisions regarding fertility preservation with specialist fertility services while undergoing treatment of their cancer with oncology services. Oncologists identify a need for resources enabling them to support women's fertility preservation decisions more effectively; women report wanting more specialist information to make these decisions. The overall aim of the 'Cancer, Fertility and Me' study is to develop and evaluate a new evidence-based patient decision aid (PtDA) for women with any cancer considering fertility preservation to address this unmet need. METHODS AND ANALYSIS:This is a prospective mixed-method observational study including women of reproductive age (16 years +) with a new diagnosis of any cancer across two regional cancer and fertility centres in Yorkshire, UK. The research involves three stages. In stage 1, the aim is to develop the PtDA using a systematic method of evidence synthesis and multidisciplinary expert review of current clinical practice and patient information. In stage 2, the aim is to assess the face validity of the PtDA. Feedback on its content and format will be ascertained using questionnaires and interviews with patients, user groups and key stakeholders. Finally, in stage 3 the acceptability of using this resource when integrated into usual cancer care pathways at the point of cancer diagnosis and treatment planning will be evaluated. This will involve a quantitative and qualitative evaluation of the PtDA in clinical practice. Measures chosen include using count data of the PtDAs administered in clinics and accessed online, decisional and patient-reported outcome measures and qualitative feedback. Quantitative data will be analysed using descriptive statistics, paired sample t-tests and CIs; interviews will be analysed using thematic analysis. ETHICS AND DISSEMINATION:Research Ethics Committee approval (Ref: 16/EM/0122) and Health Research Authority approval (Ref: 194751) has been granted. Findings will be published in open access peer-reviewed journals, presented at conferences for academic and health professional audiences, with feedback to health professionals and program managers. The Cancer, Fertility and Me patient decision aid (PtDA) will be disseminated via a diverse range of open-access media, study and charity websites, professional organisations and academic sources. External endorsement will be sought from the International Patient Decision Aid Standards (IPDAS) Collaboration inventory of PtDAs and other relevant professional organisations, for example, the British Fertility Society. TRIAL REGISTRATION NUMBER:NCT02753296; pre-results.

Background: Epithelioid sarcoma (ES) is a soft-tissue sarcoma (STS) associated with a high local recurrence rate after primary resection and high incidence of distant metastasis. Little is known about clinical course and response to systemic treatments. This retrospective analysis aims to provide a reference for future ES-specific studies. Methods: Data from patients with locally advanced/metastatic ES entered in prospective multi-sarcoma phase II/III trials were pooled: EORTC trial 62012 (doxorubicin vs. doxorubicin/ifosfamide), 62043 (pazopanib), 62072 (pazopanib vs. placebo) and 62091 (doxorubicin vs. trabectedin). Patients had either a local or centrally confirmed diagnosis of ES, inoperable/metastatic disease at study entry and were eligible for the respective trial. Response was assessed using RECIST 1.1. Progression-free survival (PFS) and overall survival (OS) were calculated from date of study entry. Results: Among 1099 patients with advanced STS, 27 ES patients (2.5%) were eligible (17 male (63%), median age at diagnosis 50 yrs, range 19-72). 18 (66.7%) received chemotherapy as 1st line treatment (5 doxorubicin, 8 doxorubicin/ifosfamide, 2 pazopanib, 3 trabectedin) and 9 (33.3%) received pazopanib in 2nd line or later. Primary tumor was located in lower extremity (N = 8; 29.6%), upper extremity (N = 5; 18.5%), retro/intra-abdominal (N = 4; 14.8%), other locations (N = 10; 37.0%). At study entry, metastases were mainly found in lung (N = 17; 63%), lymph nodes (N = 9; 33.3%), bone (N = 8; 29.6%) and soft tissue (N = 7; 25.9%). Best response for 1st line patients was 4 partial responses (PR, 22.2%), 10 stable disease (SD, 55.6%) and 4 progressive disease (PD, 22.2%). In subsequent lines, pazopanib achieved 1 PR (11.1%), 4 SD (44.4%) and 4 PD (44.4%). All patients but one progressed. Median PFS and OS were 3.8 (95% CI: 2.2-4.8) and 10.8 months (95% CI: 8.1-21.3), respectively. 5 patients were still alive at time of the according trial analysis. Conclusions: With all limitations of a retrospective analysis of such small dataset, objective response and survival outcomes of this locally advanced/metastatic ES population are relatively poor. The clinical testing of novel agents remains a high priority. Legal entity responsible for the study: EORTC Funding: Epizyme Disclosure: P. Schoffski: Institutional support from Epizyme for advisory functions. T. Brodowicz: Personal fees from Roche (lecture fee), personal lecture and advisory fees from Amgen, Bayer, Novartis, PharmaMar, Eisai and Eli Lilly outside the submitted work. All other authors have declared no conflicts of interest.

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

Young people with cancer exhibit unique needs. During a time of normal physical and psychological change, multiple disease and treatment‐related symptoms cause short and long‐term physical and psychosocial effects. Little is known about how young people cope with the impact of cancer and its treatment on daily routines and their strategies to manage the challenges of cancer and treatments. We aimed to determine how young people describe these challenges through a social media site.

Teenagers and young adults (TYA) cancer contributes substantially to morbidity and mortality in a population with much to offer society. TYA place distinct challenges upon cancer care services, many reporting feeling marginalized and their needs not being met in adult or paediatric cancer services. Bone tumours such as osteosarcoma and Ewing sarcoma, because of their age at presentation and the complexity of their care, are where challenges in managing (TYA) with cancer have often been most readily apparent. Bone sarcomas may be managed by paediatric or medical oncologists, and require fastidious attention to protocol. A lack of recent improvement in survival in TYA with bone tumours may be linked to a lack of specialist care, poor concordance with therapy in some situations and TYA-specific pharmacology. Participation in clinical trials, particularly of young adults, is low, hindering progress. All these requirements may be best met by a concerted effort to create collaborative care between adult and paediatric experts in bone sarcoma, working together to meet TYA patients' needs.

ABSTRACT Aim: Teenage and young adult (TYA) oncology patients fall between adult and paediatric services. Recent data has revealed early deaths in TYAs. Amongst adults, early deaths are a proxy measure for late stage presentation or treatment delay, whereas amongst children early deaths are often treatment-related. In TYA patients the cause of early deaths remains unknown. We aim to examine early deaths and whether they are related to anti-cancer therapy. Methods: We analysed population based Northern and Yorkshire Cancer Registry and Information Service data of all patients aged 13-24 years inclusive at cancer diagnosis (n = 1137), over 12 years to 31/12/2011. We used morphological classification, descriptive statistics, cox regression models and death certificate review to examine patterns and causes of death, within one year of diagnosis. Results: Of 1137 TYAs, 95 died within 12 months of diagnosis (45% of all deaths). Most of these deaths were between 90 and 365 days. Only patients with leukaemias, non-Hodgkin's lymphoma, central nervous system tumours and soft tissue sarcomas (STS) died within 30 days. Highest risk of mortality within one year was in acute lymphoblastic leukaemia (HR 1.86, p = 0.039), STS (HR 2.38, p = 0.004) and gastric carcinoma (HR 10.86, p Conclusions: The highest incidence of deaths in TYA cancer patients is in the first year after diagnosis. One year mortality varies according to cancer diagnosis. Very few deaths are attributed to anti-cancer therapy. Reducing one year death rate, in STS and AML particularly, may contribute to improving survival in TYA cancer patients. Disclosure: All authors have declared no conflicts of interest.

Aim: ICON6 evaluated cediranib (20mg/d) added to standard chemotherapy (CT) in first relapse of platinum sensitive ovarian cancer. 456 patients received up to 6 cycles of CT and were randomised 2:3:3 between placebo (arm A), concurrent cediranib and maintenance placebo (B), concurrent and maintenance cediranib (C). Median follow-up was 16.6 months, 2 year restricted mean (unrestricted median) progression free survival was 3.1 (2.4) months longer in arm C than arm A (p < 0.001), mean (median) overall survival was 2.7 (6.8) months longer (p = 0.04). This sub-study addresses quality of life (QL) of patients over 1 year from randomisation.