What do survivors say about RTA?

Conference Evaluation Data

Overall, across the three biggest conferences to date, attendees ranked the weekend conference a 9.1 out of 10.

RTA has proven to be a vehicle for relationship building among AYA survivors. Focus group participants unanimously agreed that the biggest benefit of RTA is networking with and learning from their peers, in person.

Late Effects and Follow-Up Care

Comments related to the late effects and follow-up care content of Rise To Action^©, which is presented in the format of a full-group plenary session, reveal that many survivors discover during the session that follow-up care is more long-term than they previously thought. As one survivor said, “I’ve realized it’s not just about making sure the cancer doesn’t come back.”  Some survivors also realized during the course of this panel that they should be looking into transferring from pediatric to adult care and they learned the appropriate steps to do that.

Feedback from the late effects sessions also reveal that survivors gain a great deal of comfort from listening to their peers share their personal experiences to reaffirm that they aren’t “alone,” “crazy,” or “hopeless.”  One survivor who attended RTA-DC in 2008 said in the focus group following that conference that he learned a lot about himself while listening to the panel - “especially about depression. I had not learned that depression was common from my doctors, but I learned it here. When [the panelist] described it, I thought ‘He’s describing me.’”

Nearly 97% of respondents marked that they “Agree” or “Strongly Agree” that RTA achieved its objective of preparing survivors to “manage their follow-up medical care and deal with issues unique to them.” This was also proven in 2006 in Atlanta, where survivors filled out a survey before and after the conference and were asked to rank their awareness of potential future health problems as a result of their cancer and treatment. The donut comparison charts below show the improvement in survivor confidence about their knowledge of late effects from before the session to afterwards. 

      Health Insurance

The survivors who attended an RTA conference between 2007 and 2009 ranked the below ten issue areas as their greatest concerns, which are all important components of CCCA’s Rise To Action^© conferences. The overwhelming concerns about health insurance, as demonstrated by the above bar graph, is why CCCA quickly adapted health insurance from a breakout topic into a full-group plenary session and is looking into ways to explore this issue in even more detail in future conferences.

Before attending a Rise To Action^© conference, our data shows that less than half of AYA survivors felt confident in their knowledge of their own health insurance status and options.

As a breakout session topic at RTA-NY in 2007, nine out of ten attendees ranked the session as “excellent.” The popularity of this topic led us to incorporate health insurance and legal protections issues as a full-group plenary session in both DC and LA with successful results. As one survivor from LA said,

“I know there are options now, rather than just hearing I am uninsurable.”

       Advocacy

The knowledge gained about advocacy during this presentation is demonstrated well by the 2006 pre- and post-conference Atlanta data, with less than 60% of attendees having been involved with cancer advocacy in the past. At the conclusion of the presentation, 94% of the survivors indicated that they understand the role of an advocate and are more interested in becoming one. One survivor in her early twenties said, “The info presented and the activity they had us do helped me come up with a great idea I would love to follow through with."