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.