The International Neuroendocrine Cancer Alliance releases a White Paper on Unmet Needs in Information, Access to Care, and Research in NETs
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 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.
“Lets’ Talk about NETs” – on 10th November 2017 around the globe
INCA members from 17 countries around the world are partnering with local cafes and community groups to share coffee in Let’s Talk about NETs branded coffee cups and help local public learn about NETs. World NET Cancer Day is a worldwide effort to bring hope and information to people living with NET cancers, their caregivers and families; ensure equity in access to care and treatment for NET cancer patients around the world; encourage more funds for research, treatments, patient support, and resources for NET cancer.
Facts about NETs
Neuroendocrine Tumors (NETs) is the umbrella term for a group of unusual, often slow growing cancers, which develop from cells in the diffuse endocrine systems. They are found most commonly in the lungs or gastrointestinal system, but they can arise in other parts of the body, such as the pancreas, ovary and testes, among other sites. NET cancers are on the rise and can affect both men and women at various stages of their life, from 17 – 90 years old.
Seven in every 100 000 people are diagnosed with NETs each year. Recently published research found that the incidence of NETs has increased seven-fold between 1973 and 2012. While the reasons for this increase are not entirely known, most NET expert believe that better diagnosis plays an important role in this trend. Historically, NET patients are regularly misdiagnosed for years and often treated for common conditions, such as IBS, Crohn’s, and Colitis. NETs are now ranked as the 2nd most prevalent GI malignancy after colon cancer.
The International Neuroendocrine Cancer Alliance (INCA) is a non-profit charitable organization whose mission is to serve as the global voice in support of neuroendocrine cancer patients. It is a global alliance made up of 20 patient advocacy and research groups in 17 countries from Asia, Asia Pacific, Europe, and North America. Member organizations come from Australia, Belgium, Bulgaria, Canada, Denmark, France, Germany, India, Ireland, Italy, Japan, New Zealand, Norway, Singapore, Sweden, United Kingdom, and the United States. INCA was founded in 2013 to raise awareness of NET cancers among decision makers, healthcare professionals, and the general public to ensure equity in access to information, care and treatment for NET cancer patients around the world and to encourage more funds for research, treatments, patient support, and resources for NET cancers.
The INCA White Paper was supported through a grant from the Neuroendocrine Tumor Research Foundation (NETRF), a non-profit charitable organization whose mission is to fund research for better treatments and cures of neuroendocrine cancers. NETRF also support patients and families through its website and education programs and is a member of INCA.