The questionnaire was completed by 193 women, for a response rate of 40%. Age was determined for 154 women, subtracting the date of birth from the date of completion of the questionnaire. The mean age of the population was 33.2 y/o (median: 34.0; range 18-52). Mean age of patients who answered the regular mail questionnaire was 36.2 y/o (range 22-52), while mean age of those who responded to the electronic questionnaire was 31.9 y/o (t = 3.65; 152 df; p< 0.001).
SF-12® Health Survey Results
The majority of participants rated their general health status as, at a minimum, “good” (n= 111/158; 70%). More than half of the participants reported that moderate (n=78/129, 61%) and extreme (n=98/135; 73%) daily activities had been limited by symptoms. The majority of women reported that work-related activities were affected due to their physical health. Many reported that due to physical limitations (64%) and emotional problems secondary to symptoms (63%) they accomplished less than expected. The majority (66%) also reported that they were limited in the kind of work-related activities they could carry out ().
Impact of endometriosis-related symptoms on work-related activities experienced during the past four weeks (SF-12®)
Almost all participants reported effects of endometriosis-related symptoms on their general wellbeing during the last month. Only 18% of women reported feeling calm and peaceful often (i.e., most or all of the time), while 27% felt low energy, 35% felt depressed and discouraged, and 38% felt impairments in social life. The SF-12® PCS and MCS scores were 38.4±6.7 and 39.5±6.2, respectively, indicating substantial disability.
EHP-5 Questionnaire Results
Many participants (43%) reported that pain interfered with work substantially (i.e., quite a bit or extremely) during the last month, and were physically impaired (e.g., had difficulties walking; 41%). Also, they reported substantial impact in their emotional health: 41% perceived that the pain controlled their life, 68% had mood changes, 61% felt that no one understood how they felt, and 48% had a poor concept of their physical appearance. We categorized patients into two groups, based on their perception of the level of impact that painful symptoms had on three EHP-5 domains: work, physical impairment and emotional health. Patients who reported that pain interfered frequently or always with these domains were categorized as “high impact”. Very few patients reported that painful symptoms never interfered with these domains ().
Impact of endometriosis-related symptoms on physical and mental health (EHP-5)
Two thirds of the participants (64%) reported being childless (i.e., child care was irrelevant). Many patients reported often (frequently or always) feeling depressed when considering the possibility of not having kids (56%), being worried about sexual aspects of personal relationships (38%), and being frustrated about perceived inefficacy of treatments (39%). Very few patients (13%) felt that their physicians minimize their symptoms.
WPAI: Work Productivity and Activity Impairment Survey Results
The majority of the participants were employed for a mean of 24.6 hours (hrs) during the last week (median of 30.0 SD±15.98 hrs). Three quarters of respondents (n=116/155; 74.8%) were working when the survey was answered. Subjects were categorized as full-time employees (>28 hours per week; n=64; 68%) and part-time employees (≤ 27 hours per week; n=30; 31.9%).
When asked “how many hours did you miss from work because of endometriosis?”, 101 participants reported missing work in the past week due to their health problem (mean loss in work time = 7.41 hrs; SD±8.97 hrs) during those seven days when symptoms were worse. They reported a mean loss of 4.31 hrs (SD±10.0 hrs) due to other reasons (e.g., vacations, holidays) during the same period.
Patients were asked to rate the impact of endometriosis-related symptoms on productivity loss and daily life using a scale of 0 to 10. Less than 10% reported not being affected by the disease. Of those patients who reported being affected, a substantial proportion perceived that symptoms extremely affected their work productivity (48%; n=44/92; median impact) and daily life activities (57% n=80/140). Based on this scale, loss of productivity had a median of 6.0 (moderately affected) and daily life activities a median of 7.0 (extremely affected). These data show that for approximately half of the patients with endometriosis in this study there is a substantial impact of endometriosis symptoms in important aspects related to productivity at work and daily life ().
Impact of endometriosis-related symptoms on productivity loss and daily life activities (WPAI)
The effects of endometriosis symptoms on the four domains measured by WPAI were quantified as % median: 13%±27.6 (mean: 22) of average loss in work time (absenteeism); 65%±27.5 (mean: 60) of their work was impaired (presenteeism); 64%±35.5 (mean: 57) of perceived loss in efficiency levels (work productivity loss); and 60%±36.4 (mean: 54) of the patients’ regular daily activities were disturbed (activity impairment).
Comparison between EHP-5 and WPAI results
Next, patients were categorized as “high impact” vs “low impact” based on three EHP-5 domains: impact at work, physical impairment, and emotional health. EHP-5 results were compared with WPAI results to determine if higher EHP-5 scores would be able to predict a greater impact of symptoms on work. We observed that, indeed, patients categorized as “high impact” had significantly higher WPAI Presenteeism, Work productivity loss and Activity impairment scores indicating greater impairment and less productivity ().
WPAI Mean Scores Among Groups Classified According to EHP-5 Domains (Disease Impact at Work, Physical Impairment, and Emotional Health)