Strengths and limitations
This research’s strengths involve the considerable sample size and the decision to seek the layperson perspective, building a foundation for knowledge-translation research. There are known limitations of an online survey approach, mostly related to the inclusion criteria of the respondents. As previously shown with the results, there is a risk of bias secondary to the motivation for responding to the survey, where the vast majority of the responses came from individuals already suffering with the disease and with the diagnosis confirmed. In this particular case, this inclusion bias does not impair the conclusions; on the contrary, it reveals even more clearly the hypothesis that the knowledge regarding the diagnostic options for endometriosis is significantly impaired. One would expect the knowledge level of the unaffected general population to be even less. Finally, our recruitment was almost solely via advisory and support groups on social media, and people recruited via this method are likely to have more severe symptoms than those recruited in other settings such as tertiary care. So, it is possible that our respondents may be biased towards a more severe impact of their symptoms on their lives and may not represent the population of people with endometriosis as a whole.
The respondents’ inclusion was also influenced by the language, given that the survey was distributed only in English and primarily English-using social media profiles. Since the survey origin was Australia, there was greater involvement of the local Australian advocacy organisations, yielding a disproportionate response from Australia. Comprehension barriers to participating or adequately responding to the survey could have occurred, particularly because it dealt with medical information and a complex and controversial disease. However, the pilot questionnaire with the integration of feedback should have mitigated this effect.