Abstract:
Objective: To gain insight into patients’ understanding of
endometriosis, utilised sources of information on endometriosis, and
perceptions of available treatment options.
Design: Observational cross-sectional study.
Setting: Data were collected from an outpatient specialist endometriosis
clinic within a tertiary hospital.
Participants: New patients referred with symptoms suggestive of
endometriosis.
Methods: A paper based questionnaire was completed by new patients on
their first presentation to the clinic.
Main outcome measures: Patient understanding of symptoms and causes of
endometriosis, types and expectations of treatment, and sources of
information utilised by patients in researching endometriosis.
Results: Approximately half of all included patients were unsure of the
aetiology of endometriosis. Patients who relied on information from
specialist gynaecologists were more optimistic about the outcome of
surgical treatment, while those who relied on general practitioners were
more optimistic about the outcome of medical treatment, when compared to
those who sought information from online sources.
Conclusions: Endometriosis is a chronic and debilitating condition, yet
there is limited data available regarding both the sources of
information that patients’ access, and their perceptions of the disease.
Given the high proportion of patients in our study who lacked knowledge
of endometriosis, and the negative correlation between the use of social
media for information and perception of treatment, there is a clear need
for improved access to evidence-based resources for patient education.
Funding: None received
Keywords: Endometriosis, laparoscopy, social media, patient education