While the number of responses to this year's #gyncsm Survey was not as high as in 2019 (11 vs. 33), Christina and I wanted to summarize the results and share them with the community.
Of the eleven responses, the majority were gyn cancer patients, followed by caregivers, healthcare providers, a previvor, and cancer researcher. When asked what cancer diagnosis a patient/survivor/caregiver was dealing with the majority (6) were ovarian cancer, with one with endometrial cancer, one with vaginal cancer and one other cancer. Those who responded in the health care field represented cancer researchers, a therapist, a nurse and two in the other category.
When asked how they found the #gyncsm chat and community, most responded that they stumbled upon it on X/Twitter while one responded they joined us from the Inspire(/OCRA) community. The eleven respondents participated in our community in the following ways:
When asked if they visited our blog in the past year the majority of respondents read the blog post before or after the chat while others visited it to check the resources. Forty-five percent did not know we had a website/blog.
When asked about the most important topics that we have covered in the past two years, Advocacy and Survivorship were the most popular topics while there were no choices for urogynecology .
When asked how they used what they learned in our chats the majority shared that they advocated for themselves or their loved one, followed by recommending or using the resources we provided. The results for this question were similar to results from our 2019 community survey (see: 2020 ASCO Annual meeting survey results abstract https://meetings.asco.org/abstracts-presentations/187383).
Suggested topic ideas for the future included:
- Finding clinical trials in your area
- Cancer induced infertility
- PTSD and fear of recurrence
- Long term survivorship - is it Luck?
- How close are we to a screening test
- Staging of disease - should it be revised
- Mental health
Respondents preferred quarterly meetings at 8pm on the second Wednesday of the month. Three respondents would like to see the #gyncsm community on Facebook.
Thank you so much to all the survey participants for taking part in this survey and for everyone's continued support and use of the #gyncsm hashtag.
See you in December when we chat about cervical cancer.
Dee and Christina
Co-moderators of the #gyncsm
