Quantifying the NET Patient Experience Through the First Global NET Patient Survey:
A Collaboration Between the International Neuroendocrine Cancer Alliance and Novartis
1164TiP
Teodora Kolarova, Maia Sissons, John Leyden
1
2
3
APOZ & Friends, Sofia, Bulgaria; 2NET Patient Foundation, Hockley Heath, United Kingdom; 3The Unicorn Foundation, Mosman, NSW, Australia
1
BACKGROUND
•Neuroendocrine tumors (NETs) are a rare and heterogeneous group of malignancies that arise from
neuroendocrine cells throughout the body1
•The incidence of NETs has increased 5-fold in the past 30 years2
•Diagnosis often occurs late in the course of the disease3,4
–– NETs may be difficult to detect until they have spread or grown sufficiently large
–– Symptoms associated with NETs are often similar to more common conditions (eg, irritable
bowel disease, asthma)
–– Some NETs do not cause symptoms until they have grown or metastasized
•Delayed diagnosis may have a substantial impact on overall survival (OS)
–– Median OS of patients with metastatic disease is 33 months2
•NETs are not well understood by the general public and many in the medical community
–– Data on the impact of NETs on patients are outdated and inconsistently available around
the world
–– Only a few small (N < 20) qualitative studies on the patient experience with NETs have been
published5,6
•The International Neuroendocrine Cancer Alliance (INCA) is a network of independent charitable
organizations and patient groups from 14 countries across the world that aims to be the global
voice in support of people living with NETs
•INCA and Novartis collaborated on the first global survey to gather data on the NET patient
experience
This is the first global survey on the
NET patient experience from initial diagnosis
to current management
Figure 1. Global NET patient survey was distributed in many countries.
Region
Americas
Country
Canada, United States, other countries in North, Central, and South America
Asia
Japan, Singapore, other countries in Asia
Europe
Belgium, Bulgaria, Germany, France, Norway, United Kingdom, other countries in Europe
Oceania
Australia, New Zealand, other countries in Oceania
•Data will be analyzed at global, regional, and country-specific levels and on specific patient
subgroups, including
–– Type of NET: gastrointestinal, pancreatic, lung
–– Time since diagnosis: <5 years, ≥5 years
–– NET specialist center visited at least once a year: yes, no
•Statistical differences at the 95% confidence level (P < 0.05) between regions and countries will be
highlighted
•Hall & Partners, a research organization, will field and analyze the results (funding was provided by Novartis)
INCA and Novartis are equal collaborators in the survey
Table 6. NET Treatment: Your experience of NET treatments and tests
How is your current overall health?
How does having NET make you feel?
Which symptoms do you experience/how frequently?
Which conditions do you experience as a result of NET?
Do you have a caregiver?
What is your current employment status?
Which HCPs are involved in the ongoing management of your NET?
How would you describe awareness of NETs (HCPs, your caregivers, colleagues, friends,
family, NET patient support groups, other people)?
What is your level of support from these people/groups?
To what extent do people understand how NET affects your life?
How would you rate the overall quality of NET treatments today?
Table 3. Diagnosis: Think back to when you were diagnosed with NET
Table 7. NET Education: Information sources you have used to learn about NETs
How did you feel when you were initially diagnosed with NET?
What was the time from first symptom to NET diagnosis?
What was your experience of getting a NET diagnosis?
Which condition were you initially diagnosed with before receiving a diagnosis of NET?
How many HCPs were involved in your diagnosis of NET?
How many visits to HCPs did you have to make?
Did you receive your diagnosis at a medical center that specializes in NETs?
Describe your NET at the time of diagnosis (confined to one organ? metastatic?).
What impressions did you get from your medical team about your NET?
Before diagnosis, did you think your symptoms could be the result of cancer?
Is there room for improvement in the process of diagnosing NETs? Did you get sufficient
information to educate you about NETs? What would have helped you have a better experience?
How knowledgeable do you feel about NETs?
Beyond your medical team, which information sources do you use to learn about NETs? How useful
are these sources?
What is your access to and impressions of the available tools, resources, and information?
This survey will capture the
quintessential journey of the NET patient
GLOBAL NET PATIENT SURVEY
•The survey contains a series of questions (Tables 1-7) designed to facilitate better understanding
of the individual patient experience of living with NETs, including
–– The patient’s context and overall awareness of NETs
Have you ever been asked to participate in a NET clinical trial? Have you ever approached your
medical team and asked to participate in a trial? Have you ever participated in a NET trial?
Which tests have you received for the ongoing management of your NET? How many times do you
go for tests within a year?
Have you ever traveled to another country for a NET treatment or test?
–– Diagnosis experience within different time periods
–– Burden of disease
–– Ongoing management and interactions with the medical team
–– Awareness of, use of, and satisfaction with available NET treatments
–– Information sources used for education about NETs
•Each question is typically associated with potential options from which the participant can choose
•Patient demographics—including age, gender, location (region), level of education, and how
participants heard about the survey—will also be collected
Table 5. NET Management: Focus on the interactions you have had with your NET medical care providers
DESIGN
•INCA invited NET patients to participate in a 25-minute anonymous online survey through fliers,
website postings, emails, and social media channels of the INCA NET patient groups
–– Extensive use of online social media sources through local/regional advocacy groups allowed
recruitment of a large number of patients with this rare type of cancer
•Paper surveys were developed in several languages and were distributed by patient groups and
health care professionals (HCPs) to reach patients who do not have access to social media
•The survey was available in 10 languages: American English, British English, Bulgarian, Dutch,
French, French Canadian, German, Japanese, Norwegian, and Simplified Chinese (Figure 1)
Table 1. Information Initially Collected by the Screener
In what language would you like to take the survey?
In which country/region do you live?
Have you been diagnosed with NET?
How many years ago were you first diagnosed?
What was the primary site?
What has happened to your primary tumor since diagnosis?
How does your physician describe the functional status and grade of your NET?
How often do you see each HCP?
How far do you live from your primary NET HCP?
Have you ever been to a medical center that specializes in NETs? Has a team of different HCPs
helped manage your NET? How often have you visited such a center?
Describe the approach taken by your NET medical HCPs in the management of your NET. Do they
function as a well-coordinated team?
What is discussed during meetings with your NET HCPs?
Describe your approach to the management of your NET. How engaged are you in making decisions
about your care?
• Diagnostic experience
• Impact of disease
• Medical management
Describe your overall feelings about your NET treatment and your NET medical team.
What would help you with the ongoing management of your NET?
Status Update
•The survey was launched in February 2014 and was closed on May 31, 2014
•Analyses are ongoing
• Knowledge, awareness, and support
• Access to NET specialist centers
• Quality-of-life issues
REFERENCES
’
1. Kaltsas GA et al. Endocr Rev. 2004;25:458-511.
2. Yao JC et al. J Clin Oncol. 2008;26:3063-3072.
3. Modlin IM et al. J Natl Cancer Inst. 2008;100:1282-1289.
4. Vinik AI et al. Pancreas. 2010; 39:713-734.
5. Feinberg Y et al. Eur J Oncol Nurs. 2013;17:541-545.
6. Griffiths J et al. Eur J Oncol Nurs. 2007;1:434-441.
ACKNOWLEDGMENTS
•We thank our global partners who contributed to this project:
1928 NET patients from across the globe
completed the survey (Figure 2)
Table 4. QOL: What is the impact of NET on your daily life?
How much of a negative impact, if any, has your NET had on your overall QOL?
How much have various areas of your life been negatively affected, if at all, by your NET
(eg, relationships, job performance, travel, emotional health, finances, social life)?
What feelings do you experience as a direct consequence of having NET?
How has NET impacted your work? Have you had to stop working?
Since diagnosis, what changes have you had to make (eg, stop/cut back on social life, see a
therapist, make exercise changes)?
Are people (eg, spouse, neighbor, work manager) aware that you have NET? If not, why haven’t
you told them?
What would help you to live with NET?
This survey will provide important data—
anticipated to help improve care—from multiple
countries on the needs of and the challenges for
NET patients, including
Which treatments (1) have you heard of, (2) do you have access to, (3) have you received/are
you receiving?
OBJECTIVES
•This survey will gather data from multiple countries with the goal of increasing understanding of
the experience and needs of NET patients and of the differences and similarities among countries
and regions to help improve NET awareness and care
•Information will be gathered on the diagnostic experiences, interactions with medical teams,
knowledge and awareness levels, and information sources of NET patients and on the impact and
management of the disease
CONCLUSIONS
Table 2. Current Status: Tell me about your current situation living with NET
Figure 2. 1928 NET patients from across the globe participated in the survey.
Canada
164
(9%)
Germany
311
(16%)
UK
156
(8%)
France
117
(6%)
US
758
(39%)
Other
Europe
179
(9%)
Japan
81
(4%)
Australia
The Unicorn Foundation
Belgium
vzw NET & MEN Kanker Belgium
Bulgaria
The Association of Cancer Patients and Friends (APOZ)
Canada
Carcinoid-Neuroendocrine Tumour Society (CNETS) Canada
France
Association des Patients Porteurs de Tumeurs Endocrines Diverses (APTED)
Germany
Netzwerk Neuroendokrine Tumoren
Japan
PanCAN Japan
New Zealand
Unicorn Foundation NZ
Norway
CarciNor
Singapore
Carcinoid & Neuroendocrine Tumor Society (CNETS) Singapore
UK
NET Patient Foundation
UK
The Association for Multiple Endocrine Neoplasia Disorders (AMEND)
US
The Carcinoid Cancer Foundation
US
Caring for Carcinoid Foundation
•Editorial assistance for this poster was provided by ApotheCom and was funded by Novartis
Pharmaceuticals Corporation.
Mobile Friendly e-Prints
Oceania
138
(7%)
Region*
Patients
Americas
Asia
Europe
Oceania
928 (48%)
99 (5%)
763 (40%)
138 (7%)
Text Message (SMS)
*Notes on Regions:
• The Americas included the US and Canada, plus 6 respondents from other countries in
North/Central/South America
• “Other Europe” included Norway (54), Belgium (29), Bulgaria (18), and other European countries (78)
• Asia included Japan plus Singapore and other Asian countries (18)
Base: All respondents (n = 1928). In which country do you live? In which region do you live?
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Presented at the ESMO (European Society for Medical Oncology) 2014 Congress; September 26–30, 2014; Madrid, Spain. [email protected]
This study was sponsored by Novartis Pharmaceuticals Corporation
© 2013 Novartis Pharmaceuticals Corporation, used under license by INCA and its member organizations