Raising awareness of neuroendocrine cancers around the world

NET Cancer Day

November 10

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Let’s Talk About NETs 2017

World NET Cancer Day (WNCD) – 10th November, is an annual, awareness-raising campaign coordinated by the International Neuroendocrine Cancer Alliance (INCA) at an international level and supported by NET organizations around the globe including INCA members in 17 countries.

For 2017, INCA’s “Let’s Talk about NETs” campaign focuses on unmet needs in the NET community. These needs were identified via an online survey among NET patients and their caregivers, patient advocate leaders, and healthcare professionals in 26 countries. The survey results were further enriched through in-depth interviews with 10 clinical leaders and nine patient advocate leaders from around the globe. The assessment conducted by INCA identified significant unmet needs: in the provision of information to patients at diagnosis, and access to the latest diagnostics and to essential services and multidisciplinary care. A lack of patient involvement in research strategies and clinical trials also transpired.

The INCA White Paper on unmet needs in the global NETs patient community concludes that joint efforts should tackle the concerns about this neglected cancer and address the needs of the NET community. INCA and the NET medical societies around the globe have pledged to work together to implement solutions to the challenges and gaps identified.

The INCA White Paper was supported through a grant from the Neuroendocrine Tumor Research Foundation (NETRF), a non-profit charitable organization and INCA member. Ron Hollander, who serves as executive director of NETRF and INCA President, explains that the survey lays a foundation for future focus. “The INCA White Paper documents and quantifies NET patients’ unmet needs so that as a global NETs community we can identify priorities and move forward to bridge these gaps and improve patient outcomes.”

Unmet needs in information on NETs

NET patients report difficulties in accessing information that is credible, medically vetted, in their own language, and directly applicable to the healthcare system in their country. Eighty-four percent of surveyed patients said that their needs for information about treatment options were not met at the time of diagnosis.

NET patient organizations appear to be instrumental in guiding patients, as 70 percent of respondents stated they rely on information from patient advocacy groups’ websites. Results show huge information gaps even from the perspective of patients actively involved in the NET community and a significant gap in perceptions between patients and healthcare professionals. Over half of the patients and patient leaders surveyed indicated that their needs for information on psychological care were not at all met, and one-third stated that their needs for information on how to manage the condition (e.g. through diet, exercise and symptom control) were not at all met.

NET patients are regularly misdiagnosed for years and often treated for more common conditions, such as IBS, Crohn’s, and Colitis. It takes five to seven years on average from initial onset of symptoms to proper diagnosis. Consequently, 58 percent of the surveyed patients indicated that their disease had spread to other organs at the time of diagnosis.

Medical professionals in relevant fields (e.g. gastroenterologists, endocrinologists, pulmonologists, and oncologists) are not routinely educated about NETs and awareness is low. This is a hurdle to effective diagnosis and better treatment outcomes. Low awareness is particularly a barrier in the timely referral to specialist NETs multidisciplinary teams (MDT) and leading treatment centers where patients can receive optimal care.

Access to treatment and research trials

Exciting developments have occurred with the development of new treatments, diagnostic and imaging technologies. However, they are often not available or accessible for NET patients across or within countries. Interview and survey responses summarized in the White Paper highlight the widely held perception about inadequate access to emerging and effective diagnostic and treatment options like Peptide Receptor Radionuclide Therapy (PRRT) and imaging technology Gallium-68 DOTATATE/DOTATOC PET/CT constitute the largest access gap.

Research in neuroendocrine cancers is a neglected field within cancer research. There are urgent and widely agreed needs for more research in: basic understanding of what makes tumors form and grow; earlier diagnosis and optimal treatment sequencing.

While research priorities for patients and healthcare professionals differ, there is a shared view that patients are not involved enough in research design. Only three percent of patient advocate leaders and 23 percent of healthcare professionals surveyed said patients are currently involved enough in NETs research.

The need for collaboration between patient leaders and healthcare professionals to fill the gaps

The INCA White Paper on unmet needs in the global NETs patient community concludes that joint efforts should tackle the concerns about this neglected cancer and address the needs of the NET community. INCA and the NET medical societies around the globe have pledged to work together to implement solutions to the challenges and gaps identified.

Download World NET Cancer Day 2017 infographic (pdf)

Download the White Paper Unmet needs in the global NETs patient community: an assessment of major gaps from the perspectives of patients, patient advocates and NET health professionals

NET Cancer Day