Materials and methods
An observational cross-sectional pilot study was conducted over a 12-month period from October 2017 to October 2018 inclusive, in an outpatient endometriosis clinic within a tertiary hospital. Patients presenting for their first appointment, with symptoms suggestive of endometriosis and over 18 years of age, were invited to complete a paper questionnaire on arrival by the clinic nurse. An information sheet was provided outlining the purpose of the study. Participation was voluntary, consent was implied if the patient agreed to complete a questionnaire and all questionnaires were de-identified. Fifty-six patients agreed to participate and completed questionnaires (one questionnaire was incomplete and excluded from analysis). The questionnaire covered five main areas: patient demographics (age, ethnicity, primary language, family history of endometriosis, parity and mode of delivery, use of contraception and type), menstrual cycle, current symptoms of endometriosis, understanding of endometriosis, previous treatments and expectations of treatment. Ethical approval was sought and granted on the 15th of August 2017 from the Women and Newborn Health Service Governance, Evidence, Knowledge and Outcome Ethics Committee (GEKO reference 15884). No funding was received for this study, and the authors have no conflicts of interest to declare.
Patients were asked to rate their understanding of endometriosis. Reply options included nil, poor, average, good and excellent. Patients were asked if they were satisfied with their current level of knowledge (‘yes/no’ response).
To assess the sources of information utilised to obtain knowledge, eighteen options were provided, namely: friends, family members, word of mouth, general practitioner, specialist obstetrician/gynaecologist, other medical staff, internet searches, Facebook, Twitter, internet blogs, podcasts, internet chat rooms/forums, support groups, brochures, television, newspaper articles, magazines and radio. Patients were asked to tick the options that applied to them and to rank the three most important sources (with ‘1’ the most important and ‘3’ the least important).
Patients were asked what they believed were the causes of endometriosis, their symptoms of endometriosis, what treatment options they knew were available and which treatment options they believed to be the best for endometriosis. In addition, a free text box was provided. Finally, patient expectations of treatment were assessed. Patients were asked if they thought that their treatment would bring about ‘no change’ or ‘an improvement/deterioration’ of their pain symptoms, reproductive potential and quality of life (QOL) with regard to surgical and medical treatment.
Demographic and descriptive statistics were initially computed in Excel. Frequencies and percentages were calculated for categorical variables including: age group, pain, fertility, satisfaction with knowledge, previous treatment, sources of information and expectations of treatment. For some categorical data, grouping of responses was required as numbers in individual groups were too small for analysis (‘no change’ and ‘worsening’ were grouped together). The mean, range and standard deviation were calculated for continuous variables such as severity of pain, number of pain days per month and life impact severity rating. Statistical analyses were performed in SPSS v22. Chi-Squared tests were utilised to analyse categorical variables and continuous variables were analysed using independent t-tests. Specifically, Chi-square analyses between satisfaction of knowledge and history of previous treatment (medical or surgical) were performed. Independent t-test analyses were performed between life impact severity rating and the number of days per month pain was experienced, against satisfaction with current knowledge of endometriosis.