Introduction
Endometriosis is a chronic, inflammatory condition affecting 10% of the reproductive age group[1-3]. Endometriosis can be associated with debilitating symptoms including pain and subfertility[3-5]. The aetiology of endometriosis remains unclear and is probably multifactorial, involving hormonal, immunological and environmental factors[6]. Endometriosis is ‘incurable’, therefore numerous medical and surgical treatment options, aimed at suppression of symptoms and prevention of disease progression, exist ranging from hormonal therapies to laparoscopic excision or ablation[4, 5, 7, 8]. An average delay of 10 years between onset of symptoms and formal diagnosis has been reported. Whilst many disease related factors are known to contribute to this issue[9], a lack of patient awareness of endometriosis is known to play a major role, as does accessibility of high quality patient information[4, 10]. Unsurprisingly, patients who lack information experience higher levels of emotional distress when diagnosed with endometriosis[2]. This, in turn, contributes to delays in diagnosis as patients may be unaware of the significance of their symptoms.
Recently, the impact of endometriosis on patients’ lives has been recognised. The National Action Plan for Endometriosis, which was launched in Australia in 2018[11], formally acknowledged its burden as a chronic condition. One of the first priorities is to increase awareness and education in Australia, for both patients and health professionals, in an effort to reduce delays to diagnosis. In an era where unauthorised information is widely available online[12], there is a lack of data demonstrating which sources are regularly utilised by patients to obtain such information and the authenticity of the different sources. In addition, there is minimal understanding regarding what knowledge patients have in relation to the various treatment options available, and a lack of insight into how patients perceive these treatments.
The objective of this pilot study was threefold: to ascertain what patients understand about endometriosis, where they obtain their information from and to gain an understanding of perceptions of treatment options for endometriosis.