LRG Patient Registry Shares Survey Results

When being diagnosed with any type of disease, it is important to see a specialist. A specialist will have the proper experience to guide you in the right direction with your treatment. Due to the rarity of GIST, healthcare providers play an important role in the journey of a GIST patient. The Life Raft Group Patient Registry wants to assure that every GIST patient has access to the best care possible.

The purpose of this LRG survey was to study the correlation between treating oncologists and patients’ satisfaction in terms of treatment and guidance.

We reached out to LRG members (both Patient Registry members and non-Patient Registry members) via email, phone, the LRG Facebook Page and ListServ. Analyzing the data aided the Patient Registry in formulating an action plan of how to better help patients.

We received 378 responses from 26 countries. 83% of responses were from the U.S. and 17% international.

The first question was “Are you seeing a GIST Specialist?” This question split our subjects into two cohorts (groups). Utilizing our LRG GIST Specialist list, we were able to verify if each of those patients was actually seeing an oncologist who is a GIST expert (Figure 1).

Note: Some patients did not respond to all the questions on the survey so numbers will not always add up to group totals.

Figure 1. Are you seeing a GIST Specialist?

Are you seeing a GIST Specialist chart

We asked patients if they would recommend their GIST specialist to other patients battling GIST (Figure 2).
Figure 2. Would you recommend your GIST Specialist?

Would you recommend your GIST Specialist? chart

Based on these totals we asked each group who referred them. Knowing who referred our patients to their specialist is critical. It is important for a GIST patient to be treated properly and to see a doctor that understands the complexity of GIST.

The patients in our survey were referred by other patients, their doctor, their health insurance company, a hospital, The LRG or through their own research, friends or family.

Figure 3. Who referred you to your GIST Specialist?

Who referred you to your GIST Specialist? chart

Next, we asked, “Does your specialist answer your GIST-related questions?” (Figure 4).

Figure 4. Does your specialist answer your GIST-related questions?

Does your specialist answer your GIST-related questions? chart

What we took away from this survey

By doing this analysis, we were able to see that there is an increased instance of seeing a GIST specialist when a patient is a part of the Patient Registry. Of the 378 respondents, 219 are in our Patient Registry. 160 of these Patient Registry members responded yes to seeing a GIST specialist, while 59 responded no.

The survey set out to determine whether there was a correlation between treating oncologists and patient satisfaction measured by willingness to recommend and refer their doctor. Patients who saw a GIST specialist were more likely to do so and receive proper treatment.

Next Steps

The results of this survey have initiated a project to identify new GIST specialists in order to expand our database, further analyze the impact between seeing a GIST specialist and the overall survival among LRG Patient Registry members and continue to advocate for patients to see a GIST specialist.

Need a GIST Specialist? Visit this link.

Jennily Eshak
Author: Jennily Eshak