Thank you to everyone who completed our survey. Thirty-seven people from survivors to researchers to gynecologic oncologists completed the survey. Please note, you could skip questions so not all questions were answered by all 37 people.
The number of respondents who were patients or survivors was 54% which is similar to the percentage of patients / survivors who participate in the monthly chat. We also heard from caregivers (2.7%) , and advocates ( 10%) . Twenty-four percent of the respondents were healthcare providers and five percent were cancer researchers. We did have a few individuals who were survivors / caregivers of other cancers who also took the survey.
Of the patients / survivors who took part in the survey, a majority of them had been diagnosed with ovarian cancer while we had three cervical cancer patients and three endometrial cancer patients complete the survey.
Health care providers who filled out the survey were predominantly gynecologic oncologists, radiation oncologists, and nurses but we also had one peer-to-peer support person and a health reporter participate.
When we asked you why you took part in the chat, we learned that many of you joined us to learn and because the topics were interesting. You also joined us to meet other community members, to provide support and to share advice. A number of the respondents joined us to share knowledge to improve the quality of care of women diagnosed with these diseases.
We asked you which topics (Sept 2013 -2014) you found most important. Based on the average rating the top 5 topics were:
- Advocating for Yourself and Others
- Ovarian Cancer Awareness
- Clinical Trials
- Fertility and Sexuality
- Caregiver Family issues
Then we provided a list of topics for 2015 and asked you which ones you felt were most important. The top 5 topics are:
- Dealing With Long and Short Term Side Effects
- Personalized Medicine
- Dealing with a Recurrence
- Dealing with Anxiety
- What I wish I knew Before Treatment
In the next question we provided some areas in which you could use what you learned in the chat. Many people used or shared the resources mentioned in the chat or on our blog, advocated for yourself and others, and made changes in your personal or professional practice.
When we asked you how we could improve the community, you told us to
promote our blog more and to increase how many patients participate in the chat. One person suggested we reach out to cancer centers to post about the chat. You also asked for the questions in advanced so you could be bettered prepared. We started doing that for the October chat and will continue to do so.
We asked you how often you participated in our chat. Ten of you had not participated in the chat at all. Seventeen respondents took part 1-5 times and 6 took part between 6 and 13 times.
We saw similar results when we asked you how frequently you visited our blog, with eight people having never visited the blog. Fourteen visited from 1-6 times. And five people reported that they visited the blog 10+ times.
Some other important things shared:
You were happy that your non-professional voice was heard.
You asked to have a spot in a blog to share your blogs. (We do have links to resources and the major gyn cancer organizations on our blog. )
Some were a bit uncomfortable in the company of physicians. (We hope our new partnership with Smart Patients will allow you to feel better connecting with your peers. Be sure to register at https://www.smartpatients.com/gyncsm to continue discussing our chat topics.)
We also heard from one person that we provided “fuzzy” information. We apologize if we are not communicating in the best way for you to understand the information. Please contact us via e-mail ( gyncsm@gmail.com ) with any issues you may have.
We appreciate the feedback you have provided and will use it to plan our 2015 chat topic list and as a guide as we grow our community.
Thank you!
Christina Lizaso
Dee Sparacio
#gyncsm Co-moderators
