We wanted to share the results of the second survey Trisha Bundy conducted on behalf of our online #Gastroparesis community.
The survey consisted of 8 questions and was shared publicly on Facebook and Twitter as well as in our closed Gastroparesis Support Group and in our Gastroparesis: Fighting for Change advocacy groups. We had 534 total respondents.
Note that nearly 95% of respondents indicated they experience abdominal pain always, usually, or sometimes. Only 5% rarely or never experience pain. In addition, nearly 95% always, usually, or sometimes experience bloating/distention; about 91% always, usually, or sometimes experience nausea; and nearly 72% always, usually, or sometimes experience vomiting.
Beyond these options, fatigue was the most common symptom listed (nearly 95% of respondents), followed by dehydration (nearly 76%); malnutrition (just over 71%), and headaches or migraines (just over 67%).
When asked where they find beneficial information (multiple selections permitted), an overwhelming number of respondents (nearly 90%) cited Facebook. This is to be expected, as the survey was conducted largely on Facebook, of course. Online research was the next highest mentioned source (just over 73%). Again, since this was an online survey, that is to be expected. There was a major drop-off after these sources, with nonprofits being cited by slightly more than 44% of respondents. Doctors and nurses came in at an underwhelming (nearly) 36%. [Makes one wonder why this figure is not up there with the Facebook and online research numbers. Perhaps we might collect essays regarding this in future surveys.]
Slightly more than 47% of respondents indicated they felt their GI is doing the best she/he can to help, while only 15% noted their GI does not listen/dismisses their concerns. Nearly 6% indicated that, by choice, they do not see a GI. [Again, it might benefit us to dig deeper into these issues in future surveys.]
Finally, slightly more than 41% of respondents indicated they had not undergone surgeries — though it is not clear what portion of those respondents were offered procedures but declined or were not offered procedures they would have liked to have undergone. (These are common complaints we see in the groups.) Just over 32% had their gallbladders removed, though it is not clear if this surgery was pre or post-diagnosis. Nearly 33% of respondents have had or now have tubes or TPN as a source of nutrition.
We value and thank you for your participation in these surveys! We are new to this and are learning as we go, but we hope the results (while not quite scientific) are useful. We would love to hear your ideas for future surveys.
Thank you all so much!