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Neuroendocrine neoplasms (NENs) are rare neoplasms that occur in various organs and present with diverse clinical manifestations. Pathological classification is important in the diagnosis of NENs. Treatment strategies must be selected according to the status of differentiation and malignancy by accurately determining whether the neoplasm is functioning or nonfunctioning, degree of disease progression, and presence of metastasis. The newly revised Clinical Practice Guidelines for Gastroenteropancreatic Neuroendocrine Neoplasms (GEP-NENs) comprises 5 chapters—diagnosis, pathology, surgical treatment, medical and multidisciplinary treatment, and multiple endocrine neoplasia type 1 (MEN1)/von Hippel–Lindau (VHL) disease—and includes 51 clinical questions and 19 columns. These guidelines aim to provide direction and practical clinical content for the management of GEP-NEN preferentially based on clinically useful reports. These revised guidelines also refer to the new concept of “neuroendocrine tumor” (NET) grade 3, which is based on the 2017 and 2019 WHO criteria; this includes health insurance coverage of somatostatin receptor scintigraphy for NEN, everolimus for lung and gastrointestinal NET, and lanreotide for GEP-NET. The guidelines also newly refer to the diagnosis, treatment, and surveillance of NEN associated with VHL disease and MEN1. The accuracy of these guidelines has been improved by examining and adopting new evidence obtained after the first edition was published. Supplementary Information The online version contains supplementary material available at 10.1007/s00535-021-01827-7.

This report summarizes the presentations and discussion in the first Japan Clinical Oncology Group-European Organisation for Research and Treatment of Cancer Quality of Life/Patient-Reported Outcome workshop funded by the National Cancer Center Hospital that was held on Saturday, 1 September 2018 in Tokyo, Japan. The infrastructure and understanding regarding the Quality of Life/Patient-Reported Outcome assessment of cancer patients in Japan is still immature, in spite of the increased demand for oncological Patient-Reported Outcome research felt not only by researchers but also by patients or other stakeholders of cancer drug development. The workshop aimed to share each perspective, common issues to be considered and future perspectives regarding the strong alliance between the European Organisation for Research and Treatment of Cancer Quality of Life Group and the Japan Clinical Oncology Group for Quality of Life/Patient-Reported Outcome research as well as explore the possibility of conducting collaborative research. European Organisation for Research and Treatment of Cancer is a leading international cancer clinical trials organization, and its Quality of Life Group is a global leader in the implementation of Quality of Life research in cancer patients. The three invited speakers from the European Organisation for Research and Treatment of Cancer Quality of Life Group presented their perspective, latest methodology and ongoing projects. The three speakers from the Japan Clinical Oncology Group presented their current status, experience and some issues regarding data management or interpretation of the Patient-Reported Outcome data. The two patient advocates also shared their expectations in terms of advances in cancer research based on the Patient-Reported Outcome assessment. As the next steps after this workshop, the Japan Clinical Oncology Group and European Organisation for Research and Treatment of Cancer have decided to cooperate more closely to facilitate Patient-Reported Outcome research in both the groups, and the Japan Clinical Oncology Group has approved the establishment of a new committee for Quality of Life/Patient-Reported Outcome research in Japan., The JCOG-EORTC QOL/PRO workshop was held on Saturday, 1 September 2018 in Tokyo and aimed to share the current status of QOL research and facilitate cooperative ties between the JCOG and EORTC.

Background With the recent advances in genomic medicine, the unmet needs of cancer patients (unmet needs) may be changing. A large-scale unmet needs survey was launched in 2021 with the aim of understanding the latest unmet needs and sharing information with healthcare professionals and patients, thereby contributing to the improvement of cancer treatment in Japan. The Rare Cancer Patients' Network (RCJ) is conducting this survey in collaboration with the National Cancer Centre and the National Federation of Cancer Patients' Associations (Zenganren). This presentation will report on progress since the JSNO2021 publication. Methods A total of 38 questions were asked in six categories: (1) detection and diagnosis; (2) treatment; (3) genomic medicine (access to genetic mutation testing); (4) clinical trials; (5) necessary information, medical care and support systems; and (6) quality of life. A combination of free-text and multiple-choice questions were asked on these, with approval obtained from the Ethics Review Committee of the National Cancer Centre at the end of October 2021 to conduct the survey online via the RCJ and the All Cancer Federation network (response deadline: 08/2022). Results The survey is scheduled to complete response collection and final analysis in August 2022. The results of the interim analysis will be presented at the poster session. Conclusions Depending on the final response collection, it may be possible to make comparisons between cancer types and identify specific patient needs in individual cancer types, such as brain tumours. At JSNO2022, we will present the results of each of the 38 questions and discuss the unmet needs of brain tumour patients with healthcare professionals, hoping that results and discussions will improve healthcare with a focus on brain tumour patients.

IntroductionElderly cancer patients often have ageing-related physical and psychosocial problems that should be fully shared with their oncologists. Geriatric assessment (GA) can assess these ageing-related problems and guide management. Communication support might also facilitate implementation of GA-guided management. We will conduct a multicentre, randomised controlled trial to examine the efficacy of a programme that combines a GA summary, management recommendations and communication support to facilitate ageing-related communications between elderly Japanese patients with cancer and their oncologists, and thus to implement programme-guided management.Methods and analysisWe plan to recruit a total of 210 patients aged ≥70 years, diagnosed with incurable cancers of gastrointestinal origin, and referred for first-line or second-line chemotherapy. In the intervention arm, a summary of management recommendations based on a GA and question prompt list (QPL) will be provided to patients and shared with their oncologists at the first outpatient visit after randomisation by trained intervention providers. For 5 months after the initial intervention, implementation of GA-guided management recommendations will be reviewed monthly with the patients and their oncologists to implement management as needed. The GA and QPL will be re-evaluated at 3 months, with a summary provided to patients and their oncologists. Those participants allocated to the usual care arm will receive usual oncology care. The primary endpoint is the number of conversations about ageing-related concerns at the first outpatient visit after randomisation.Ethics and disseminationThis study was approved by the institutional review board of the National Cancer Center Japan on 15 April 2021 (ID: 2020–592). Study findings will be disseminated through peer-reviewed journals and conference presentations.Trial registration numberUMIN000045428.

Due to the increasing incidence and prevalence of neuroendocrine tumors (NETs), there is a need to assess any gaps in awareness and care. A survey was undertaken in 2017 to identify perceived unmet needs from the perspectives of patients/families, patient advocates and health care professionals (HCPs). The survey consisted of 33–37 questions (depending on type of respondent) across four areas: information, care, treatments and research. In total, 443 participants from 26 countries responded: 338 patients/families, 35 advocates and 70 HCPs. Perceived unmet needs regarding provision of information at diagnosis differed between groups. While 59% of HCPs believed they provided sufficient information, informational needs were mostly/fully met for only 30% of patients and 18% of advocates. Additionally, 91% of patients and 97% of advocates felt that patients had to search for information themselves. Availability of Gallium‐68‐Dotatate PET/CT scan was limited for the majority of patients (patients: 73%; advocates: 85%; HCP: 86%), as was access to treatments, particularly peptide receptor radionuclide therapy (patients: 42%; advocates: 95%; HCPs: 77%). All groups felt that standards of care, including psychological needs and diagnosis of mental health, were not fully met. Although about two‐thirds of patients were managed by a multidisciplinary team, 14% of patients reportedly did not have enough contact. All groups supported more patient involvement in research; patients and advocates prioritized improvement in diagnosis and HCPs focused on clinical trials. This survey revealed significant unmet needs but differing perceptions regarding these among the groups. There is a need for investigation and collaboration to improve standards of care for NET patients., What's new? Even though the incidence of neuroendocrine tumors (NETs) has been rising worldwide, the current management of patients varies considerably, potentially leaving many with suboptimal care. An international survey was carried out in 2017 to investigate unmet needs in the NET patient community. The survey revealed that patients perceive numerous unmet needs in key areas including provision of information, diagnostics and treatment access, care standards, and research involvement. While healthcare professionals were aware of these gaps, they generally underestimated their magnitude. Patients and healthcare professionals need to work together to improve the lives and prospects of the increasing numbers of patients.

IntroductionCommunication is an essential aspect of care for patients with progressive serious illnesses. This study aims to evaluate the efficacy of a new, integrated communication support program for oncologists, patients with rapidly progressing advanced cancer and their caregivers.Methods and analysisThe proposed integrated communication support programme is in the randomised control trial stage. It comprises a cluster of oncologists from comprehensive cancer centre hospitals in a metropolitan area in Japan. A total of 20 oncologists, 200 patients with advanced pancreatic cancer and the patients’ caregivers are enrolled in this study as of the writing of this protocol report. Oncologists are randomly assigned to the intervention group (IG) or control group (CG). Patients and caregivers are allocated to the same group as their oncologists. The IG oncologists receive a 2.5-hour individual communication skills training, and patients and caregivers receive a half-hour coaching intervention to facilitate prioritising and discussing questions and concerns; the CG participants do not receive any training. Follow-up data will be collected quarterly for 6 months for a year and then annually for up to 3 years. The primary endpoint is the intergroup difference between before-intervention and after-intervention patient-centred communication behaviours during oncology visits.Ethics and disseminationThis study is conducted in accordance with the ethical guidelines for clinical studies published by Japan’s Ministry of Education, Cultural, Sports, Science and Technology, the Ministry of Health, Labour and Welfare, and the ethical principles established for research on humans stipulated in the Declaration of Helsinki and further amendments thereto. The protocol was approved by the Institutional Review Board of National Cancer Center, Japan on 4 July 2018 (ID: 2017-474).Trial statusThis study is currently enrolling participants. Enrolment period ends 31 July 2020; estimated follow-up date is 31 March 2023.Trial registration numberUMIN Clinical Trial Registry (UMIN000033612); pre-results.

12119 Background: Communication is an essential aspect of care for patients with progressive serious illnesses. Earlier discussion about patients’ values and priorities may lead to empathic communication and more goal-concordant care, and improved quality of life (QOL). This study aims to evaluate the efficacy of a newly developed integrated communication support program for oncologists, patients with rapidly progressing advanced cancer and their caregivers. Methods: Oncologists are randomly assigned to the intervention group (IG) or control group (CG). Patients with advanced pancreatic cancer after the start of first-line chemotherapy and their caregivers are allocated to the same group as their oncologists. The IG oncologists receive a 2.5-hour individual communication skills training, and patients and caregivers receive a half-hour coaching intervention to facilitate prioritizing and discussing questions and concerns about care after standard chemotherapy; the CG participants do not receive any training. Conversations during the post-intervention consultation between oncologists, patients and caregivers were audio-recorded, and were assessed on their empathic communication and information sharing performance as primary outcome. Secondary outcomes included the patient psychological distress (HADS), QOL (CoQOLo), satisfaction with communication (CSQ) and trust in oncologist (TiOS) were assessed baseline and after the consultation. Results: A total of 26 oncologists (12 intervention; 13 control; 1 excluded before randomization), 230 patients (115 intervention; 115 control), and 127 caregivers (65 intervention; 62 control) in 4 teaching hospitals are enrolled. The intervention resulted statistically significant improvements in the empathetic communication (IG: Mean = 23.4, Standard Error = 0.8; CG: M = 20.3, SE = 0.7; effect, 3.1; 95%CI, 1.0-5.3; P = 0.0063) and in the information sharing (IG: M = 17.6, SE = 0.8; CG: M = 13.2, SE = 0.5; effect, 4.4; 95%CI, 2.5-6.2; P < 0.0001). Patients in IG rated more satisfaction with communication using CSQ (effect, 2.4; 95%CI, 1.3, 3.5; P = 0.00023) than those in the CG. There were no differences in HADS total score (effect, 0.1; 95%CI, -1.0, 1.1; P = 0.90), CoQOLo score (effect, 0.4; 95%CI, -0.7, 1.4; P = 0.46) and TiOS score (effect, 0.2; 95%CI, -0.1, 0.6; P = 0.15) between patients in the IG and the CG. Conclusions: The program for oncologist and patients with rapidly progressing advanced cancer was effective in improving empathic communication and information sharing about care after standard chemotherapy, and patients’ reported satisfaction with communication without increasing psychological distress, but did not affect QOL and trust in oncologists immediately after the consultation. Clinical trial information: UMIN000033612.

Familial pancreatic cancer (FPC) is broadly defined as two first-degree-relatives with pancreatic cancer (PC) and accounts for 4%-10% of PC. Several genetic syndromes, including Peutz-Jeghers syndrome, hereditary pancreatitis, hereditary breast-ovarian cancer syndrome (HBOC), Lynch syndrome, and familial adenomatous polyposis (FAP), also have increased risks of PC, but the narrowest definition of FPC excludes these known syndromes. When compared with other familial tumors, proven genetic alterations are limited to a small proportion (< 20%) and the familial aggregation is usually modest. However, an ethnic deviation (Ashkenazi Jewish > Caucasian) and a younger onset are common also in FPC. In European countries, “anticipation” is reported in FPC families, as with other hereditary syndromes; a trend toward younger age and worse prognosis is recognized in the late years. The resected pancreases of FPC kindred often show multiple pancreatic intraepithelial neoplasia (PanIN) foci, with various K-ras mutations, similar to colorectal polyposis seen in the FAP patients. As with HBOC patients, a patient who is a BRCA mutation carrier with unresectable pancreatic cancer (accounting for 0%-19% of FPC patients) demonstrated better outcome following platinum and Poly (ADP-ribose) polymerase inhibitor treatment. Western countries have established FPC registries since the 1990s and several surveillance projects for high-risk individuals are now ongoing to detect early PCs. Improvement in lifestyle habits, including non-smoking, is recommended for individuals at risk. In Japan, the FPC study group was initiated in 2013 and the Japanese FPC registry was established in 2014 by the Japan Pancreas Society.

In order to double the number of pancreatic cancer survivors, we need to develop early detection tool and new therapies that control stage IV metastatic disease. Pancreatic cancer survivors are slowly increasing and we would appreciate welcoming them to the cancer survivor community.

e13524 Background: The aim of this global patient survey was to better understand the needs and expectations of patients with NETs regarding access to diagnostic tools and treatment. Methods: In 2017, an online, questionnaire survey of NET patients/family members, patient advocates and healthcare professionals (HCPs) was conducted. Results: In total, 443 participants from 26 countries responded: 338 patients/families; 35 advocates; 70 HCPs. Following NET diagnosis, many patients use patient association (69%) and HCP (48%) websites to fulfill their informational needs. Patients overestimated the availability of key diagnostic tools and treatments compared to HCPs: Gallium-68-Dotatate PET/CT scan was believed available by 28% of patients vs. 14% of HCPs; fluorodeoxyglucose PET by 77% of patients vs. 64% of HCPs; peptide receptor radionuclide therapy by 58% of patients vs. 23% of HCPs; genetic test/precision medicine by 75% of patients vs. 71% of HCPs; and transplantation by 86% of patients vs. 55% of HCPs. Reasons reported by patients and advocates for unavailability of treatment were: not provided by healthcare system (28% & 67%, respectively); non-referral (19% & 33%, respectively), unable to afford treatment (18% & 57%, respectively); treatment not covered by insurance (17% & 24%, respectively); distance to treatment centre (15% & 48%, respectively). Almost a third (30%) of patients had to travel more than 300 km/186 miles for treatment or consultation with a NET specialist, while 34% of patients did not have access to an MDT and those that did may be in contact with them less than once per year (14%). In contrast, advocates and HCPs believe there is wider availability of MDTs (94% and 70%, respectively). Conclusions: Patients are increasingly well-educated about NETs and often travel considerable distances to obtain specialist treatment. However, there remains considerable disparity in what patients feel is available to them in terms of the latest tools and treatments, compared to what is there in reality. This significant difference in perception needs to be managed delicately by both advocates and healthcare professionals.

Background For rare cancers, it has been difficult to develop drugs due to the small patient population. Methods Rare Cancers Japan (RCJ) members studied cancer patient support groups in the EU and USA to learn from their experience in cancer drug development. Also, RCJ members participated in clinical trial workshops organized by the European Organization of Research and Treatment for Cancer (EORTC) for patients and caregivers interested in clinical trials to learn what is expected of patient support group leaders. Results In Europe and the United States, the patient support groups actively participate and support cancer research and clinical trials from their early stages, and there is a mechanism to review research results. In addition, multi-stakeholder conferences are held regularly to discuss various issues related to the latest discovery in research as well as clinical trials. Patient groups are engaged through a program such as Patient Public Involvement (PPI) in UK, from early stages of clinical trials. Conclusions In Japan, in the area of new drug development for rare cancers, further cooperation is needed among key stakeholders, such as patient groups, academic societies, pharmaceutical companies, regulatory agencies across national borders in Asia. On this First Rare Cancers in Asia Symposium, Rare Cancer Japan, a network of Japanese rare cancer patient group, would like to discuss the unmet needs of Japanese rare cancer patients, and together discuss what new initiatives are needed in Japan and Asia to quicken the delivery of new drugs to rare cancer patients.

Pancreatic cancer is still a highly lethal disease with a 5-year survival rate of approximately 5 %. Early detection offers one of the best hopes for improving survival. Previous cohort studies and case–control studies showed that 4–10 % of pancreatic cancers have a hereditary basis, and individuals with a family history have an increased risk of developing pancreatic and extra-pancreatic malignancies. Since individuals with a family history of pancreatic cancer and those with a known genetic syndrome that predisposes to pancreatic cancer will be the first to benefit from early detection tests as they become available, familial pancreatic cancer (FPC) registries have been established in the US and Europe, but not yet in Japan. Such registries form the basis for epidemiological studies, clinical trials, and basic research on familial pancreatic cancer. There is a need for FPC registries in Japan as cancer risk varies among different populations and discoveries made in Western populations may not translate to the Japanese population. These registries in Japan will align with ongoing international efforts and add to a better understanding of the natural history, risk factors, screening strategies, and responsible genes, for improving survival of this dismal disease.

Data on MIDI, audio, text and image received by a data receiving unit (3) are data in the SMF format including event information and delta time for executing an event. A data sorting unit (4) sorts the received data according to the kind on the basis of the delta times of the data. The sorted data is reproduced by an MIDI reproducing unit (11), an audio reproducing unit (12), a text reproducing unit (13) and an image reproducing unit (14). The data reproduced by the MIDI reproducing unit and the audio reproducing unit is mixed by a mixer (15) and outputted as sound from a loudspeaker (19), and the data reproduced by the text reproducing unit and the image reproducing unit is mixed by a mixer (16) and displayed as visible information on a display unit (20). The data is reproduced at timings according to the delta times, so that the data of different kinds such as audio and video can be easily synchronized.

The nonlinear third harmonic resonance of flexural waves on a waveguide of a thin elastic plate of infinite length is investigated based on a theory of large deflection of a plate. Two types of waveguide are treated, one having both side edges supported simply and the other having both side edges fixed. Since the nonlinearity in flexural motions of a thin plate is cubic in a deflection, a quasimonochromatic flexural wave and its third harmonic wave can interact resonantly due to the nonlinearity at such a frequency that both waves can propagate simultaneously. The resonance equations for the behavior of two complex wave amplitudes are derived by the method of multiple scales. It is found that, regardless of the edge conditions, the qualitative behavior in each waveguide is governed by the same type of equations. The stationary solutions of the resonance equations show that two wave amplitudes vary periodically to exchange their energy, including solitary waves as limiting cases. Under a special condition, an ’’algebraic solitary wave’’ is also possible.