“Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs” – a collaborative effort between the International Neuroendocrine Cancer Alliance (INCA) and Novartis, was published in the Journal of Global Oncology http://jgo.ascopubs.org/content/early/2016/06/03/JGO.2015.002980.full
The Global NET Patient Survey is the first large, global initiative that attempts to characterize the impact of NETs from the patient perspective.
Impact of survey data
Despite 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 a complex group of tumours that develop predominantly in the digestive or respiratory tracts, but can occur in many areas of the body. NETs are difficult to diagnose as the symptoms may be vague and attributed to more common problems such as irritable bowel syndrome (IBS), Crohn's disease, peptic ulcer disease, gastritis, asthma, blood glucose problems, menopause and blood pressure problems.
"This manuscript publication makes us all very proud of what INCA has achieved in collaboration with Novartis, as the survey results increase understanding of the NET patient experience and identify unmet needs, while also recognizing the significance of patient-reported data, especially collected from an international perspective," commented Ron Hollander, INCA President and Executive Director of NET Research Foundation, USA.
The manuscript is authored by several representatives of INCA members and a recognized group of physician thought leaders in neuroendocrine cancer care: Simron Singh, MD (Odette Cancer Center – Sunnybrook Hospital, Canada), Dan Granberg, MD, PhD (Uppsala University Hospital, Sweden), Edward Wolin, MD, (Montefiore Einstein Center for Cancer Care, USA), Richard Warner, MD (Mt. Sinai Hospital, USA), Maia Sissons (NET Patient Foundation, UK), Teodora Kolarova (APOZ and Friends, Bulgaria), Grace Goldstein, (Carcinoid Cancer Foundation, USA) Marianne Pavel, MD (Charité-Universitätsmedizin Berlin, Germany), Kjell Öberg, MD, PhD (Uppsala University Hospital, Sweden), and John Leyden, MD (Unicorn Foundation, Australia).
"Patient-reported outcomes are the future of medicine," said Dr. Simron Singh, corresponding author of the article.
Survey results
With 1928 NET patients recruited for this survey globally, the findings brought to light the burden of NETs on patients’ daily lives, which resulted in lifestyle changes and substantial financial strain and had a negative impact on patients’ ability to work.
This survey also highlighted numerous unmet needs for patients with NETs, including the desire for better access to NET-specific medical teams (i.e., NET experts and specialist centers), as well as NET-specific treatments and information. A need for increased awareness of NETs among the medical community was also demonstrated, with patients seeking better access to more knowledgeable NET medical providers, as well as a better coordinated NET medical team. The finding that 35% of patients did not know or had not been told their tumor grade may reflect a lack of communication between patients and physicians regarding NETs.
Patients at the centre
It has been established that not only are patients more likely to be compliant with treatment if they are actively involved in their own disease management, but also they are more likely to have a better outcome if they are well informed. The findings from this survey emphasize the need for more standardized pathways of NET patient care that address ongoing issues and challenges identified by patients. Patients often reported a substantial delay in diagnosis and extensive use of healthcare resources involving large numbers of healthcare professional visits and numerous tests. Success with patient-centered approaches to NET care (improved outcomes and quality of care) is increasingly being demonstrated in multidisciplinary specialist centers.
A key strength of this global patient-reported survey is that findings directly reflect patients’ perspectives on NETs. Having an understanding of how patients experience their disease is unique and of significant value, because it directly aligns with the new movement in healthcare toward patient-centered care. A concerted effort from clinicians and HCPs at various levels is needed to effectively interpret the data and successfully implement appropriate care processes to bring these improvements to NET patients around the globe. As regional and country-specific analyses of these survey data have also been conducted, INCA has collaborated with its organizations by country to use this information to help better inform NET patient care locally.
"The first global survey of NET patient experiences – a collaborative effort between INCA and Novartis, shows the significant burden of NETs with regard to symptoms, impact on the quality of life, and healthcare resource use, while providing valuable findings that may be used in future research to gain a better understanding of this rare disease and insights regarding best practices for disease management.", said Teodora Kolarova, Executive Director of INCA.
A key strength of this global patient-reported survey is that findings directly reflect patients’ perspectives on NETs. Having an understanding of how patients experience their disease is unique and of significant value, because it directly aligns with the new movement in healthcare toward patient-centered care. A concerted effort from clinicians and HCPs at various levels is needed to effectively interpret the data and successfully implement appropriate care processes to bring these improvements to NET patients around the globe. As regional and country-specific analyses of these survey data have also been conducted, INCA has collaborated with its organizations by country to use this information to help better inform NET patient care locally.
"The first global survey of NET patient experiences – a collaborative effort between INCA and Novartis, shows the significant burden of NETs with regard to symptoms, impact on the quality of life, and healthcare resource use, while providing valuable findings that may be used in future research to gain a better understanding of this rare disease and insights regarding best practices for disease management.", said Teodora Kolarova, Executive Director of INCA.
About INCA
INCA is a 501c3 nonprofit organization, EIN 46-2961023, headquartered in the United States.
A key focus of INCA, established initially as an informal alliance in 2010 at a meeting in Berlin, Germany, is to raise awareness of neuroendocrine cancer in the healthcare community and throughout the general public.
There are currently 18 member patient groups and advocacy organizations from Asia Pacific, Australia, Europe, and North America (listing attached).
Encouraging early diagnosis by working collaboratively with the healthcare community and the public, the Alliance also recognizes universal access to high-quality multidisciplinary care and the dissemination of accurate and user-friendly information about neuroendocrine cancer as its top priorities. A third critical strategic pillar for the Alliance is advancing research on NETs to develop better treatments and cures for all forms of neuroendocrine cancer.
INCA also serves as a global platform to support existing and new patient-focused neuroendocrine groups and advocacy organizations from around the world. By maximizing the resources of its current members and actively reaching out to new ones, INCA encourages sharing best practices and experience, which is crucial in the context of rare cancers.
More on INCA at www.netcancerday.org and www.incalliance.org
INCA Full Members
A.I.NET, Italy
AMEND, UK
APOZ, Bulgaria
APTED, France
Carcinoid Cancer Foundation, USA
CarciNor, Norway
CARPA, Sweden
CNETS, Canada
CNETS, Singapore
NET Patient Foundation, UK
NET Research Foundation, USA
Netzwerk Neuroendokrine Tumoren, Germany
Netpa, Denmark
PanCAN, Japan
Pheo ParaTroopers, USA
The Unicorn Foundation, Australia
The Unicorn Foundation, New Zealand
VZW NET & MEN Kanker, Belgium
