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To characterize the health-related quality of life (HRQOL) of Canadian women with a self-reported diagnosis of endometriosis (DxE).
Methods
Canadian women aged 18–49 years completed a survey from December 2018 through January 2019 in which HRQOL was assessed via the 12-item Short Form Health Survey (SF-12) and Endometriosis Health Profile-30 (EHP-30) questionnaire. We used t tests to compare SF-12 scores between women with and without a self-reported DxE, as well as the severity of hallmark endometriosis symptoms, including menstrual pelvic pain/cramping, non-menstrual pelvic pain/cramping, and dyspareunia, for women with a DxE (moderate/severe vs. mild/none). The effects of overall endometriosis symptom severity on HRQOL were assessed via analysis of variance.
Results
In total, 26 528 women without a DxE and 2004 women with a self-reported DxE were included. SF-12 scores were significantly lower for women with versus without a DxE (Mental Component Summary: 38.6 vs. 41.2; Physical Component Summary: 47.3 vs. 52.1; both P < 0.001), indicating reduced HRQOL. Moderate/severe hallmark endometriosis symptoms were associated with low SF-12 scores (i.e., worse HRQOL), with the greatest impact from non-menstrual pelvic pain/cramping. EHP-30 scores for women with a DxE ranged from 40.6 to 46.8, with the greatest impairment in self-image. Women with severe endometriosis symptoms had EHP-30 scores 1.3- and >2-fold higher (i.e., worse) than those with moderate and mild symptoms, at 67.5–74.6 versus 51.3–56.9 and 25.6–32.9, respectively.
Conclusion
Canadian women with a self-reported diagnosis of endometriosis had significantly impaired health-related quality of life, which was inversely correlated with endometriosis symptom severity. This finding highlights a substantial unmet need among women with endometriosis.
Résumé
Objectif
Caractériser la qualité de vie liée à la santé des Canadiennes ayant un diagnostic d'endométriose autodéclaré.
Méthodologie
Des Canadiennes âgées de 18 à 49 ans ont répondu à un sondage entre décembre 2018 et janvier 2019 dans lequel la qualité de vie liée à la santé était évaluée au moyen d'un sondage sur la santé abrégé de 12 questions (SF-12) et du questionnaire EHP-30 (Endometriosis Health Profile). Nous avons utilisé des tests de Student pour comparer les scores du SF-12 entre les femmes avec et sans diagnostic d'endométriose autodéclaré, ainsi que la sévérité des symptômes caractéristiques de l'endométriose, notamment les crampes ou douleurs pelviennes menstruelles, les crampes ou douleurs pelviennes non menstruelles et la dyspareunie, chez les femmes avec un diagnostic d'endométriose (modéré à sévère par rapport à léger ou aucun). Les effets de la sévérité globale des symptômes de l'endométriose sur la qualité de vie liée à la santé ont été évalués par analyse de la variance.
Résultats
Au total, 26 528 femmes sans diagnostic d'endométriose et 2 004 femmes avec un diagnostic d'endométriose autodéclaré ont été incluses. Les scores du SF-12 étaient significativement plus faibles chez les femmes avec un diagnostic d'endométriose comparativement aux femmes sans diagnostic d'endométriose (résumé de la composante mentale : 38,6 par rapport à 41,2; résumé de la composante physique : 47,3 par rapport à 52,1; les deux P < 0,001), indiquant une diminution de la qualité de vie liée à la santé. Les symptômes caractéristiques modérés à sévères de l'endométriose ont été associés à des scores SF-12 bas (c.-à-d. une détérioration de la qualité de vie liée à la santé); les conséquences les plus importantes étaient associées aux crampes et douleurs pelviennes non menstruelles. Les scores du EHP-30 chez les femmes ayant un diagnostic d'endométriose variaient de 40,6 à 46,8; l'image de soi a connu la plus forte détérioration. Les femmes présentant des symptômes sévères d'endométriose ont obtenu des scores 1,3 à plus de 2 fois plus élevés (c'est-à-dire pires) que les scores de celles présentant des symptômes modérés ou légers, soit 67,5–74,6 par rapport à 51,3–56,9 et 25,6–32,9 respectivement.
Conclusion
Les Canadiennes ayant un diagnostic autodéclaré d'endométriose avaient une qualité de vie liée à la santé significativement détériorée, ce qui était inversement proportionnel à la sévérité des symptômes de l'endométriose. Cette conclusion met en évidence un besoin important non comblé chez les femmes atteintes d'endométriose.
Symptoms of endometriosis include dysmenorrhea, chronic non-menstrual pelvic pain, dyspareunia, abnormal bleeding between menstrual cycles, infertility, and chronic fatigue.
Endometriosis significantly reduces women's health-related quality of life (HRQOL) by interfering with physical functioning and the ability to perform everyday activities, reproductive planning and intimate relationships, social interactions, and work productivity.
there are limited data regarding the impact of endometriosis on HRQOL in Canadian women, and there may be important differences between these patient populations that could affect HRQOL. Therefore, we conducted this study to assess HRQOL in Canadian women with a self-reported diagnosis of endometriosis (DxE) compared with women without DxE and to evaluate the effects of symptom severity on HRQOL.
METHODS
Study Design and Participants
We undertook this survey to determine the impact of endometriosis symptoms on HRQOL in Canadian women with a self-reported DxE versus those without a self-reported DxE. To maximize the response rate, we used three independent response panels as sampling frames: the Survey Sampling International panel (now Dynata, Shelton, CT; www.dynata.com), the Leger panel (Toronto, ON; leger360.com), and the Lightspeed panel (now Kantar, Vancouver, BC, lightspeedresearch.com). Panel members received an invitation via email to participate in a new survey. Women aged 18–49 years who resided in Canada and completed the study consent form were eligible to participate. From December 7, 2018, through January 24, 2019, we collected survey responses from 30 000 Canadian women. The survey was also available in Canadian French. We weighted survey data based on the 2016 Canada Census data
by distributions of age, education, geographical region, and household income to ensure the survey sample was representative of the Canadian female population.
The survey contained a prevalence screener and a section with endometriosis-specific questions. The prevalence screener included questions on demographic characteristics, whether respondents had received a DxE, and questions regarding symptom experience. DxE was based on patient reports and was not verified against medical records. Women were asked to select symptoms experienced in the past 4 weeks from a list of endometriosis-related symptoms and to indicate symptom severity as “mild,” “moderate,” “severe,” or “not experienced.” Women were asked to complete the 12-item Short Form Health Survey (SF-12) v2.0
as part of the prevalence screener to assess their HRQOL in the past 4 weeks in the following eight domains: general health (GH), physical functioning (PF), role physical (RP), bodily pain (BP), vitality (VT), social functioning (SF), role emotional (RE), and mental health (MH). Mental Component Summary (MCS) scores, which summarize VT, SF, RE, and MH domains, and Physical Component Summary (PCS) scores, which summarize PF, RP, BP, and GH domains, were determined per the method described.
Scores ranged from 0 to 100, where 100 indicates the highest level of health. The SF-12 v2.0 scoring algorithm weights and standardizes scores per U.S. population norms.
The percentages of women with MCS and PCS scores the same as or better than, below, or well below benchmark scores were determined based on age-adjusted (when available) U.S. population norms (mean, 50; standard deviation, 10).
If women responded “yes” to the question “has a doctor ever told you that you have or are suspected of having endometriosis?” they were eligible to complete the endometriosis-specific section of the survey. This second part of the survey asked women with DxE about diagnostic experience, treatment patterns, work productivity, health care resource utilization, and HRQOL. Respondents were asked to complete the disease-specific Endometriosis Health Profile-30 (EHP-30) questionnaire
based on endometriosis symptoms experienced in the past 4 weeks. The 30-item survey includes five core scales: pain, control and powerlessness, emotional well-being, social support, and self-image. In our survey, we also included questions from the EHP-30 modular questionnaire regarding sexual intercourse. Each item is answered on a 5-point Likert-type scale, and scores are transformed to a 0–100 scale, with higher scores indicating worse HRQOL.
Measuring quality of life in women with endometriosis: tests of data quality, score reliability, response rate and scaling assumptions of the Endometriosis Health Profile Questionnaire.
This report focuses on HRQOL data from the SF-12 and EHP-30 surveys.
Data Analyses
Data for each survey question were only reported for respondents who answered the question. Continuous variables were summarized by means and standard deviation, and categorical variables were reported as percentages. SF-12 domain and summary scores and benchmarks were compared between women with and without DxE via t tests. SF-12 scores were compared between women with DxE experiencing moderate/severe hallmark symptomatology and mild/no hallmark symptomatology for each hallmark symptom (menstrual pelvic pain/cramping, non-menstrual pelvic pain/cramping, dyspareunia) via t tests. EHP-30 analyses were performed for women with DxE only. Differences in EHP-30 scores across overall symptom severity levels were assessed using analysis of variance with post hoc Dunnett's C tests. All data analyses were performed using IBM SPSS Statistics v.25 (IBM Corp., Armonk, NY).
Ethical Approval
This study was reviewed and approved by the Copernicus Group Institutional Review Board.
RESULTS
Study Population
A total of 30 000 female Canadian residents aged 18–49 completed the survey prevalence screener. After applying sample weighting, data from 26 528 women without DxE and 2004 women with self-reported DxE were analyzed. The demographic characteristics were similar between women with and without DxE (Table 1), and the majority of women in both groups were white. All Canadian provinces and territories were represented among women who completed the survey.
Includes Prince Edward Island, Newfoundland and Labrador, Nova Scotia, and New Brunswick. CEGEP: general and vocational college; DxE: diagnosis of endometriosis.
6.1
7.1
Education level
No certificate/diploma/degree
13.5
13.4
Secondary (high) school diploma/equivalency certificate
20.0
27.7
Apprenticeship or trades certificate/diploma
6.5
6.3
College, CEGEP, or other non-university certificate/diploma
21.5
22.0
University certificate/diploma below bachelor level
5.0
3.5
Bachelor's degree
14.8
18.2
University certificate/diploma/degree above bachelor level
18.3
7.4
Declined to answer
0.4
1.5
Type of insurance
Government program
13.8
–
Private
68.4
–
None
17.8
–
Note: 0.1% of women without DxE were from the Northwest Territories, Nunavut, and Yukon, each.
a Unless otherwise specified.
b Includes Prince Edward Island, Newfoundland and Labrador, Nova Scotia, and New Brunswick.CEGEP: general and vocational college; DxE: diagnosis of endometriosis.
Across all SF-12 domains, women with self-reported DxE had significantly lower scores than women without DxE, indicating worse HRQOL (Figure 1). The largest differences in SF-12 domain scores for women with versus without DxE were in the RP, GH, and MH domains. The MCS score was significantly lower for women with versus without DxE, as was the PCS score (Table 2). A significantly greater percentage of women with DxE than without DxE had MCS scores below or well below U.S. benchmark values. Significantly more women with DxE had PCS scores that were well below benchmark values.
Figure 1SF-12 domain scores in women with versus without DxE.
Mean scores for SF-12 domains among women with self-reported DxE and without DxE. Error bars indicate SD.*P < 0.05. ***P < 0.001.BP: bodily pain; DxE: diagnosis of endometriosis; GH: general health; HRQOL: health-related quality of life; MH: mental health; PF: physical functioning; RE: role emotional; RP: role physical; SD: standard deviation; SF: social functioning; SF-12: 12-item Short Form Health Survey; VT: vitality.
Benchmark comparisons based on data from the United States population; analysis controlled for age as a continuous variable. DxE: diagnosis of endometriosis; MCS: Mental Component Summary; PCS: Physical Component Summary.
MCS, %
Same or better
62.5
83.1
<0.001
Below
14.9
8.5
<0.001
Well below
22.5
8.4
<0.001
PCS, %
Same or better
25.7
39.4
<0.001
Below
16.0
17.2
0.108
Well below
58.4
43.4
<0.001
a Scores range from 0 to 100, with higher scores indicating better health.
b Benchmark comparisons based on data from the United States population; analysis controlled for age as a continuous variable.DxE: diagnosis of endometriosis; MCS: Mental Component Summary; PCS: Physical Component Summary.
The impact of hallmark endometriosis symptom severity on HRQOL was evaluated by comparing SF-12 scores between women with DxE and moderate or severe hallmark symptoms and women with DxE and mild or no hallmark symptoms. Women with DxE who experienced moderate/severe menstrual pelvic pain/cramping had significantly lower scores than women with mild/no menstrual pelvic pain/cramping for the VT, SF, PF, and RE domains (Figure 2A). The reduction in MCS score in women with moderate/severe versus mild/no menstrual pelvic pain/cramping was consistently more significant than the reduction in PCS score.
Figure 2SF-12 domain and summary scores by hallmark symptom severity.
Comparison of SF-12 mean domain and summary scores in women with DxE and moderate/severe versus mild/no (A) menstrual pelvic pain/cramping, (B) non-menstrual pelvic pain/cramping, and (C) dyspareunia. Error bars indicate SD.*P < 0.05. **P < 0.01. ***P < 0.001.BP: bodily pain; DxE: diagnosis of endometriosis; GH: general health; HRQOL: health-related quality of life; MH: mental health; MCS: Mental Component Summary; PCS: Physical Component Summary; PF: physical functioning; RE: role emotional; RP: role physical; SD: standard deviation; SF: social functioning; SF-12: 12-item Short Form Health Survey; VT: vitality.
Of the three hallmark endometriosis symptoms, moderate/severe non-menstrual pelvic pain/cramping had the greatest impact on SF-12 scores. All domain and summary scores were significantly lower for women with moderate/severe versus mild/no non-menstrual pelvic pain/cramping (Figure 2B). Women who experienced moderate/severe dyspareunia had significantly lower SF-12 scores than women with mild/no dyspareunia for the GH, VT, SF, and RP domains (Figure 2C). The PCS score was significantly reduced in women with moderate/severe dyspareunia versus women with mild/no dyspareunia, whereas MCS scores were not significantly different. For all hallmark symptoms, the largest difference between women with moderate/severe and mild/no symptoms was consistently reported in the VT domain.
EHP-30
Among women with self-reported DxE, EHP-30 subscale scores indicated moderate impact on HRQOL (Table 3). Stratification of EHP-30 subscale scores by overall symptom severity (mild, moderate, severe) showed that women with severe endometriosis symptoms had the worst HRQOL across all subscales (Figure 3). Furthermore, women with moderate symptoms had significantly higher (worse) EHP-30 scores than those with mild symptoms. Women with moderate and severe endometriosis symptoms reported the worst subscale scores for control and powerlessness, whereas women with mild symptoms reported the worst score for self-image.
n = 1818; some respondents selected “not applicable.” DxE: diagnosis of endometriosis; EHP-30: Endometriosis Health Profile-30; HRQOL: health-related quality of life.
45.2 (32.5)
a Scores range from 0 to 100, with higher scores indicating worse HRQOL.
b n = 1818; some respondents selected “not applicable.”DxE: diagnosis of endometriosis; EHP-30: Endometriosis Health Profile-30; HRQOL: health-related quality of life.
Figure 3EHP-30 scores by self-reported endometriosis symptom severity.
Scores for all EHP-30 subscales were significantly different across self-reported symptom severity groups (P < 0.001) per ANOVA.aPairwise comparisons indicated significant differences (P < 0.05) for all subscale scores in women with mild symptoms versus women with moderate symptoms.bPairwise comparisons indicated significant differences (P < 0.05) for all subscale scores in women with severe symptoms or versus women with mild symptoms or versus women with moderate symptoms.ANOVA: analysis of variance; EHP-30: Endometriosis Health Profile-30; HRQOL: health-related quality of life.
In this study, we found that Canadian women with self-reported DxE have worse mental and physical health than their counterparts without DxE and experience substantially reduced HRQOL. We found that among Canadian women with self-reported DxE, endometriosis has a greater impact on mental than on physical health, which may be attributed to reportedly high rates of anxiety, depression, and emotional distress resulting from endometriosis, leading to social isolation and feelings of hopelessness.
Furthermore, increased hallmark endometriosis symptom severity generally correlated with worse HRQOL. Of the three hallmark symptoms assessed here, moderate or severe non-menstrual pelvic pain/cramping had the most significant impact on HRQOL across all SF-12 domains. The large effect of non-menstrual pelvic pain on HRQOL is consistent with previous studies examining the impact of endometriosis-related symptoms on HRQOL.
A study comparing patients with chronic pelvic pain and endometriosis versus those with chronic pelvic pain from other causes found similarly reduced HRQOL between the two populations.
contributes to feelings of unpredictable and unrelenting symptoms, potentially causing more emotional distress, anxiety, and depression than menstrual pelvic pain/cramping.
For all three hallmark symptoms, VT domain scores had the largest difference between moderate/severe and mild/no symptomatology. Because the VT domain indicates whether women reported “having a lot of energy,” our results suggest that more severe endometriosis symptoms are associated with a lack of energy or fatigue. This is consistent with a previous study in which each of these hallmark endometriosis symptoms was associated with increased fatigue, especially non-menstrual pelvic pain/cramping.
Measuring quality of life in women with endometriosis: tests of data quality, score reliability, response rate and scaling assumptions of the Endometriosis Health Profile Questionnaire.
Greater endometriosis symptom severity correlated with reduced HRQOL across all EHP-30 domains. Among patients with endometriosis, strong correlations exist between pain intensity and reduced HRQOL,
This cross-sectional study is the first to provide a comprehensive view of the impact of self-reported DxE on HRQOL in Canadian women. We believe that the women in this study are representative of the general population of Canadian women with endometriosis at various stages of disease, rather than being limited to presurgical stages. Use of the EHP-30 questionnaire complements SF-12 data, providing disease-specific information on the impacts of endometriosis on HRQOL. There are some notable limitations to this study. Sample bias may exist: Respondents were limited to those who participate in online research panels, although data were weighted to ensure national representation by demographic characteristics. All respondents’ diagnoses and clinical characteristics of endometriosis were self-reported and could not be clinically confirmed. SF-12 scores were normalized based on scores from the U.S. general population per the scoring manual,
which may not accurately represent population norms for Canada and may therefore under- or overestimate mental and physical health impacts. Recall bias is also possible but was mitigated by limiting recall to the past 4 weeks. Longitudinal studies would provide a better understanding of how the impact of endometriosis on HRQOL may change over time and with treatment.
Current endometriosis management guidelines from the Society of Obstetricians and Gynaecologists of Canada recommend medical management as a first-line approach for most cases of endometriosis-associated pain, reserving surgical management for women in whom medical therapy has failed or who were unable to use medical therapy or are pursuing fertility treatments.
Concomitant use of analgesics (non-steroidal anti-inflammatory drugs or opioids) is recommended to manage pain while awaiting symptom resolution from other medical or surgical therapies.
Despite receiving various therapies for endometriosis, patients in our survey reported a high frequency of moderate/severe endometriosis-related pain symptoms, suggesting that current treatment options do not adequately manage pain, as has been reported elsewhere.
This study highlights the significant unmet need in Canada for a patient-centric approach to treating endometriosis, integrating medical and surgical options to reduce symptom severity and therapies that may minimize HRQOL impairments (e.g., physiotherapy, acupuncture, mental health counseling).
CONCLUSION
In the first large-scale, cross-sectional Canadian study of the impact of endometriosis on HRQOL, we found that Canadian women with a self-reported DxE had significantly reduced HRQOL. The SF-12 survey revealed substantially worse scores across all domains in women with DxE versus their counterparts without DxE. Results of the EHP-30 questionnaire indicated that endometriosis had a moderate impact on HRQOL, which increased with increasing symptom severity. Our results highlight important unmet needs in Canadian women with DxE and suggest that further research is needed to mitigate the negative effects of endometriosis on HRQOL.
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Measuring quality of life in women with endometriosis: tests of data quality, score reliability, response rate and scaling assumptions of the Endometriosis Health Profile Questionnaire.
Disclosures: This study was funded by AbbVie, Inc. AbbVie sponsored the study, contributed to the design, and participated in collection, analysis, and interpretation of data and in writing, reviewing, and approval of the final version. Medical writing assistance was provided by Emily Mercadante, PhD, of JK Associates, Inc., a member of the Fishawack Group of Companies, Conshohocken, Pennsylvania, and was funded by AbbVie Inc., North Chicago, Illinois. Dr. Singh was a study investigator in therapeutic trials for endometriosis and fibroids sponsored by Allergan, AbbVie, and Bayer and served as a speaker and advisor for Allergan, AbbVie, Bayer, Hologic, and Cooper Surgical. Dr. Soliman, Ms. Rahal, Ms. Robert, and Dr. Defoy are AbbVie employees and have stock/stock options. Dr. Nisbet is the president of One Research. Dr. Leyland has received grant support and lecture fees from AbbVie, Bayer, and Allergan and lecture fees from Johnson & Johnson.
All authors have indicated that they meet the journal's requirements for authorship.
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