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.