PurposeDespite the considerable impact of neuroendocrine tumors (NETs) on patients’ daily lives, the journey of the patient with a NET has rarely been documented, with published data to date being limited to small qualitative studies. NETs are heterogeneous malignancies with nonspecific symptomology, leading to extensive health care use and diagnostic delays that affect survival. A large, international patient survey was conducted to increase understanding of the experience of the patient with a NET and identify unmet needs, with the aim of improving disease awareness and care worldwide.MethodsAn anonymous, self-reported survey was conducted (online or on paper) from February to May 2014, recruiting patients with NETs from > 12 countries as a collaboration between the International Neuroendocrine Cancer Alliance and Novartis Pharmaceuticals. Survey questions captured information on sociodemographics, clinical characteristics, NET diagnostic experience, disease impact/management, interaction with medical teams, NET knowledge/awareness, and sources of information. This article reports the most relevant findings on patient experience with NETs and the impact of NETs on health care system resources.ResultsA total of 1,928 patients with NETs participated. A NET diagnosis had a substantially negative impact on patients’ personal and work lives. Patients reported delayed diagnosis and extensive NET-related health care resource use. Patients desired improvement in many aspects of NET care, including availability of a wider range of NET-specific treatment options, better access to NET experts or specialist centers, and a more knowledgeable, better-coordinated/-aligned NET medical team.ConclusionThis global patient-reported survey demonstrates the considerable burden of NETs with regard to symptoms, work and daily life, and health care resource use, and highlights considerable unmet needs. Further intervention is required to improve the patient experience among those with NETs.

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resUMen Se describen las alteraciones estructurales y emocionales de las familias con uno o más miembros enfermos de Huntington, en función de los diferentes síntomas, del afectado (descendientes, progenitores) y de las diferentes etapas. Consideramos que los servi-cios de ayuda a la familia deben estar compuestos por profesionales expertos en las necesidades específicas de esta enfermedad y que deben ayudar a planificar y diseñar las ayudas de manera individual, adecuada y flexible. Esta ayuda debe centrarse en superar el im-pacto de la enfermedad, en proporcionar información relevante, en buscar soluciones prácticas, en dar apoyo emocional, en diseñar los cuidados necesarios en cada caso y etapa, y en disminuir el miedo al futuro. Palabras clave. Sistema familiar. Reacciones psicológi-cas. Terapia Familiar. Enfermedad de Huntington. Tras-tornos cognitivos. Trastornos del movimiento. ABsTrACT This article describes the structural and emotional disturbances in families with one or more members affected by Huntington's disease, according to the different symptoms, the affected member (offspring, parent) and the different stages of the disease. We consider that support services to the family should be made up of professionals who are specialists in the specific needs of the disease and who should help to plan and design individual, suitable and flexible support. This support should focus on overcoming the impact of the disease, providing relevant information, seeking practical solutions, giving emotional support, designing specific care in each case and each stage, and reducing fear of the future.

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.

Introduction: Patient surveys of disease burden on daily living rarely explore the impact that patient information sources can have on optimizing care. Methods: To identify unmet needs/possible solutions for information and support to address the physical, emotional, and informational challenges that patients living with neuroendocrine tumors (NETs) may have, an online survey was conducted among patients recruited by the Carcinoid Cancer Foundation (US), Netzwerk Neuroendokrine Tumoren (NeT) e.V. (Germany), and Association de Patients porteurs de Tumeurs Endocrines Diverses (France); these organizations approved the survey questions. Results: Between August 2015 and November 2015, 741 online surveys were completed in France (n = 73), Germany (n = 240), and the US (n = 428) during a 6-week period. Over 65% of patients were diagnosed B 5 years ago. Across the three countries, multiple symptoms were experienced before diagnosis. These symptoms were consistent with those of functional tumors, most commonly diarrhea (40-47%) and flushing (12-45%). The most common emotion upon diagnosis was anxiety (20-67%). The greatest physical challenges for patients living with NETs included fatigue (26-66%), diarrhea (22-48%), pain/discomfort (13-40%), and sleep disturbance (16-35%), despite cancer management. Information sources classed as ''very useful'' included patient-association websites, disease awareness websites, and journals; ''patients-like-me'' case studies were most favored (43-67%) for future use as sources of information. Conclusion: Patients with NETs face negative emotions and multiple physical challenges that Katharina Mellar died in August 2018.