Survey: NET Patients Face New Challenges During Pandemic

Results find delays in care and treatment, fear of exposure to COVID-19

The Neuroendocrine Tumor Research Foundation (NETRF) recently surveyed NET patients and caregivers about their experiences and concerns while navigating the COVID-19 pandemic. We wanted to understand your current challenges and how we can better support you. Our efforts in education are being realigned to provide you with the information you told us you need the most.

NETRF conducted the survey between May 2 and 18, 2020.  A total of 441 patients and caregivers responded. The respondents represent 43 states. 

Our survey results showed that the NET community is most concerned about:

  • Exposure to COVID-19
  • Delay of scientific research and progress in NET treatments
  • Isolation from loved ones
  • Delayed tumor surveillance due to disruptions in medical appointments 

Concerns about resuming normal routines

Even as regular life resumes and businesses and health care facilities reopen, 97% of respondents indicated some level of concern about being exposed to COVID-19. Of those respondents with scheduled medical appointments, 42% indicated they canceled or rescheduled their medical appointments because of their concerns. Of the respondents who regularly attend patient support group meetings or in-person education conferences, 56% indicated their reluctance to attend in-person patient support group meetings or in-person education conferences. 

Disruptions to cancer care

NET patients are facing challenges accessing care due to the COVID-19 pandemic. Nearly one in four respondents noted their lab tests were delayed or canceled, while nearly one in three indicated their scans or imaging appointments were delayed or canceled.  Almost half of the respondents indicated one or more of their medical appointments was converted to a virtual meeting or telemedicine appointment. More than 50% of respondents are also concerned about medication or medical supply shortages. The good news is only 8% of respondents reported their somatostatin analog (SSA) injection appointments were delayed or canceled. Furthermore, only 7% of respondents had surgery or procedures like PRRT and liver-directed therapy delayed or canceled.

Acting upon your input

NETRF is listening to your feedback and will be using these insights to shape our educational content and how we deliver it. Director of Education and Outreach, Laran Hyder says, “we are already planning for the future as we organize a virtual NETs education conference for September, develop a new podcast episode about telemedicine, and produce new content to answer your NET questions as indicated in the survey.”

Educational resources

In the meantime, NETRF offers numerous COVID-19 educational resources for you. You can find more about what it means to be immunocompromised and how that fits in with NETs in this interview with Dr. Mark Lewis. Do you have questions about enrolling in a home injection program for your SSA shots like octreotide and lanreotide? Find resources for that on our website. You can also listen to a special episode of the NETWise podcast with tips to protect yourself during the COVID-19 pandemic. Finally, if you are feeling overwhelmed about your health or are experiencing stress, learn more about your mental health and well-being in this webinar with an oncology social worker.

Thank you for taking the time to share your experiences, questions, and concerns. We would also like to thank the NET patient support groups that shared our survey with their communities as well as our online friends who distributed the survey through social media. We are grateful for your help.

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Jean Baldwin

Thank you all for all you do. Because of your knowledge and kindness and my husband’s GREAT attitude he is here and has good quality of life. Words cannot explain my gratitude.

Janet Rattazzi

Thank you for asking for our input and for caring about what was said!