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OBJECTIVES: To evaluate whether endometriosis and menstrual health education improves knowledge and attitudes among adolescents and is acceptable. METHODS: We conducted a cluster-randomised controlled trial in a Canadian school district. Eligible classes were grades 8-12, co-educational, and English. Classes were randomly assigned either to a 60-minute virtual menstrual health and endometriosis education program before (intervention) or after (waitlist control) primary data collection. The primary outcome was change in endometriosis knowledge from baseline to follow-up (â¼4 weeks later, 6-item questionnaire). Secondary outcomes were changes in confidence in endometriosis knowledge, prioritisation of menstrual health knowledge, and comfort in discussing menstrual health, as well as intervention acceptability. The sexual health educator and statistician were masked. RESULTS: In April and May 2021, 2 intervention classes and 2 control classes completed the study. In total, 71 students enrolled, and 48 were present on both baseline and follow-up days. Mean age was 15.7 ± 1.6 years, 55% identified as non-White ethnicities, and 53% were female. The knowledge score increased by 1.86 points in the intervention classes compared with 0.30 points in the control classes, with an estimated mean difference of 1.56 (95% CI 1.12-2.00). The intervention classes showed increased confidence in endometriosis knowledge, prioritisation of menstrual health knowledge, and comfort in discussing menstrual health, compared to the control classes. The mean acceptability index was 80 (SD = 10) in the intervention classes and 70 (SD = 20) in the control classes. CONCLUSIONS: A brief menstrual health and endometriosis education program improved knowledge and attitudes among adolescents, who considered the program acceptable.
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To provide a contemporary approach to the understanding of the impact and methods for the diagnosis of endometriosis in Canada. Individuals, families, communities, health care providers, and health care administrators who are affected by, care for patients with, or manage delivery of services for endometriosis. The diagnosis of endometriosis is facilitated by a detailed history, examination, and imaging tests with providers who are experienced in endometriosis care. Surgical evaluation with pathology confirms a diagnosis of endometriosis; however, it is not required for those whose diagnosis was confirmed with imaging. There is a need to address earlier recognition of endometriosis to facilitate timely access to care and support. Education directed at the public, affected individuals and families, health care providers, and health care administrators are essential to reduce delays in diagnosis and treatment. Increased awareness and education about the impact and approach to diagnosis may support timely access to care for patients and families affected by endometriosis. Earlier and appropriate care may support a reduced health care system burden; however, improved clinical evaluation may require initial investments. Each section was reviewed with a unique search strategy representative of the evidence available in the literature related to the area of focus. The literature searches for each section of this guideline are listed in Appendix A and include information from published systematic reviews described in the text. The recommendations were developed following two rounds of review by a national expert panel through an iterative 2-year consensus process. Further details on the process are shared in Appendix B. The authors rated the quality of evidence and strength of recommendations using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach. See Appendix C (Table C1 for definitions and Table C2 for interpretations of strong and conditional recommendations). This guideline is intended to support health care providers and policymakers involved in the care of those impacted by endometriosis and the systems required to support them.
Subject(s)
Humans , Female , Biomarkers, Tumor , Endometriosis/diagnostic imaging , Canada , Ultrasonography , Laparoscopy/standardsABSTRACT
BACKGROUND: People seeking abortion in early pregnancy have the choice between medication and procedural options for care. The choice is preference-sensitive-there is no clinically superior option and the choice depends on what matters most to the individual patient. Patient decision aids (PtDAs) are shared decision-making tools that support people in making informed, values-aligned health care choices. OBJECTIVE: We aimed to develop and evaluate the usability of a web-based PtDA for the Canadian context, where abortion care is publicly funded and available without legal restriction. METHODS: We used a systematic, user-centered design approach guided by principles of integrated knowledge translation. We first developed a prototype using available evidence for abortion seekers' decisional needs and the risks, benefits, and consequences of each option. We then refined the prototype through think-aloud interviews with participants at risk of unintended pregnancy ("patient" participants). Interviews were audio-recorded and documented through field notes. Finally, we conducted a web-based survey of patients and health care professionals involved with abortion care, which included the System Usability Scale. We used content analysis to identify usability issues described in the field notes and open-ended survey questions, and descriptive statistics to summarize participant characteristics and close-ended survey responses. RESULTS: A total of 61 individuals participated in this study. Further, 11 patients participated in think-aloud interviews. Overall, the response to the PtDA was positive; however, the content analysis identified issues related to the design, language, and information about the process and experience of obtaining abortion care. In response, we adapted the PtDA into an interactive website and revised it to include consistent and plain language, additional information (eg, pain experience narratives), and links to additional resources on how to find an abortion health care professional. In total, 25 patients and 25 health care professionals completed the survey. The mean System Usability Scale score met the threshold for good usability among both patient and health care professional participants. Most participants felt that the PtDA was user-friendly (patients: n=25, 100%; health care professionals: n=22, 88%), was not missing information (patients: n=21, 84%; health care professionals: n=18, 72%), and that it was appropriate for patients to complete the PtDA before a consultation (patients: n=23, 92%; health care professionals: n=23, 92%). Open-ended responses focused on improving usability by reducing the length of the PtDA and making the website more mobile-friendly. CONCLUSIONS: We systematically designed the PtDA to address an unmet need to support informed, values-aligned decision-making about the method of abortion. The design process responded to a need identified by potential users and addressed unique sensitivities related to reproductive health decision-making.
Subject(s)
Abortion, Induced , Female , Pregnancy , Humans , Canada , Emotions , Health Personnel , Decision Support TechniquesABSTRACT
OBJECTIVE: To provide a contemporary approach to the understanding of the impact and methods for the diagnosis of endometriosis in Canada. TARGET POPULATION: Individuals, families, communities, health care providers, and health care administrators who are affected by, care for patients with, or manage delivery of services for endometriosis. OPTIONS: The diagnosis of endometriosis is facilitated by a detailed history, examination, and imaging tests with providers who are experienced in endometriosis care. Surgical evaluation with pathology confirms a diagnosis of endometriosis; however, it is not required for those whose diagnosis was confirmed with imaging. OUTCOMES: There is a need to address earlier recognition of endometriosis to facilitate timely access to care and support. Education directed at the public, affected individuals and families, health care providers, and health care administrators are essential to reduce delays in diagnosis and treatment. BENEFITS, HARMS, AND COSTS: Increased awareness and education about the impact and approach to diagnosis may support timely access to care for patients and families affected by endometriosis. Earlier and appropriate care may support a reduced health care system burden; however, improved clinical evaluation may require initial investments. EVIDENCE: Each section was reviewed with a unique search strategy representative of the evidence available in the literature related to the area of focus. The literature searches for each section of this guideline are listed in Appendix A and include information from published systematic reviews described in the text. VALIDATION METHODS: The recommendations were developed following two rounds of review by a national expert panel through an iterative 2-year consensus process. Further details on the process are shared in Appendix B. The authors rated the quality of evidence and strength of recommendations using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach. See Appendix C (Table C1 for definitions and Table C2 for interpretations of strong and conditional recommendations). INTENDED AUDIENCE: This guideline is intended to support health care providers and policymakers involved in the care of those impacted by endometriosis and the systems required to support them. TWEETABLE ABSTRACT: Endometriosis impact and diagnosis updated guidelines for Canadian health care providers and policymakers. SUMMARY STATEMENTS: RECOMMENDATIONS.
Subject(s)
Endometriosis , Endometriosis/diagnosis , Endometriosis/therapy , Humans , Female , CanadaABSTRACT
BACKGROUND: Approximately half of people with endometriosis experience deep dyspareunia; however, there is no means of objective self-testing of endometriosis-associated deep dyspareunia. AIM: The aim of this study was to assess the acceptability, test-retest reliability, and validity of a vaginal insert for a self-assessment of endometriosis-associated deep dyspareunia. METHODS: Participants were recruited from a tertiary endometriosis center. Inclusion criteria were: 19 to 49 years of age, self-reported deep dyspareunia of ≥4 of 10, and surgically confirmed endometriosis. Participants completed 2 self-assessments using the vaginal insert to self-assess tenderness at the right and left pelvic floor, bladder, cervix-uterus, and posterior cul-de-sac (vaginal fornix). The participants recorded tenderness at each pelvic site and completed a questionnaire regarding the acceptability of the vaginal insert to assess deep dyspareunia. Test-retest reliability was assessed by correlating the tenderness scores between the 2 assessment dates. Over a 4-week period, the participants also recorded deep dyspareunia severity at each penetrative vaginal sex encounter. Validity was assessed by correlating vaginal insert tenderness to deep dyspareunia severity, and also to tenderness reported on a prior gynecologic pelvic examination. OUTCOMES: The main outcome measures were the acceptability index score, tenderness (0-10) at each pelvic site, and prospective deep dyspareunia scores (0-10) over 4 weeks. RESULTS: There were 19 participants (mean age 34 ± 7 years) who completed the study. The majority identified as female (94.7%), heterosexual (89.5%), and white (89.5%). The median acceptability index score was 0.72 (interquartile range, 0.66-0.81). For test-retest reliability, the intraclass correlation coefficients were 0.79 (P = .001) for the left pelvic floor, 0.82 (P < .001) for the right pelvic floor, 0.54 (P = .07) for the bladder, 0.89 (P < .001) for the cervix-uterus, and 0.77 (P = .003) for the cul-de-sac. The correlation between the highest self-assessed mean tenderness in each participant and self-reported deep dyspareunia over 4 weeks was r = 0.32, but correlations for each pelvic site varied significantly. Tenderness at each site on prior gynecologist pelvic exam was associated with higher self-assessed mean tenderness with the vaginal insert in each participant (effect sizes = 0.42-0.88). CLINICAL IMPLICATIONS: The vaginal insert is acceptable and reliable for the objective self-assessment of endometriosis-associated deep dyspareunia, with initial evidence of validity. STRENGTHS AND LIMITATIONS: A strength was the inclusion of participants who were avoiding sexual activity and a limitation was the small sample size. CONCLUSION: Future studies with larger sample sizes are required to further establish the validity of the vaginal insert for the self-assessment of endometriosis-associated deep dyspareunia.
Subject(s)
Dyspareunia , Endometriosis , Female , Humans , Adult , Endometriosis/complications , Endometriosis/diagnosis , Pelvic Pain/complications , Cross-Sectional Studies , Self-Assessment , Prospective Studies , Dyspareunia/etiology , Dyspareunia/complications , Reproducibility of ResultsABSTRACT
INTRODUCTION: There is little to no evidence in Canada on the barriers that youth face when accessing contraception. We seek to identify the contraception access, experiences, beliefs, attitudes, knowledge, and needs of youth in Canada, from the perspectives of youth and youth service providers. METHODS AND ANALYSIS: This prospective, mixed-methods, integrated knowledge mobilisation study, the Ask Us project, will involve a national sample of youth, healthcare and social service providers, and policy makers recruited via a novel relational mapping and outreach approach led by youth. Phase I will centre the voices of youth and their service providers through in-depth one-on-one interviews. We will explore the factors influencing youth access to contraception, theoretically guided by Levesque's Access to Care framework. Phase II will focus on the cocreation and evaluation of knowledge translation products (youth stories) with youth, service providers, and policy makers. ETHICS AND DISSEMINATION: Ethical approval was received from the University of British Columbia's Research Ethics Board (H21-01091). Full open-access publication of the work will be sought in an international peer-reviewed journal. Findings will be disseminated to youth and service providers through social media, newsletters, and communities of practice, and to policy makers through invited evidence briefs and face-to-face presentations.
Subject(s)
Administrative Personnel , Contraception , Humans , Adolescent , Prospective Studies , Canada , Ethics, ResearchABSTRACT
BACKGROUND: Endometriosis-associated deep dyspareunia is associated with reduced sexual quality of life, lower self-esteem, and impaired sexual function. OBJECTIVE: The primary objective is to assess the acceptability of a phallus length reducer (brand name: Ohnut [OhnutCo]), which is a buffer worn over the penis or a penetrating object to reduce endometriosis-associated deep dyspareunia, and the feasibility of a definitive randomized controlled trial (RCT). The secondary objective is to obtain estimates of the effectiveness of the buffer. An embedded substudy will explore the acceptability and the preliminary validity and reliability of a vaginal insert for the self-assessment of deep dyspareunia. METHODS: Ours is an investigator-initiated, 2-arm RCT. We will recruit 40 patient participants with diagnosed endometriosis between the ages of 19 and 49 years, as well as their sexual partners. The participating couples will be randomized in a 1:1 ratio into the experimental arm or the waitlist control arm. The length of the study period will be 10 weeks, during which time all participants will record deep dyspareunia severity following each episode of sexual intercourse. In weeks 1 to 4, all patient participants will record deep dyspareunia severity at each sexual encounter. In weeks 5 to 10, participants in the experimental arm will use the buffer during vaginal penetration; participants in the waitlist control arm will continue engaging in vaginal penetration as usual. Participants will complete questionnaires for assessing measures of anxiety, depression, and sexual function at baseline, at 4 weeks, and at 10 weeks. In the substudy, patient participants will self-assess dyspareunia by using a vaginal insert on 2 occasions, at least 1 week apart. The primary outcomes-the acceptability and feasibility of the buffer-will be assessed with descriptive statistics, and the secondary outcome-phallus length reducer effectiveness-will be assessed by using an analysis of covariance-based approach. For the vaginal insert, we will assess acceptability, test-retest reliability, and convergent validity via correlation analyses comparing the use of the insert to clinical examination in terms of dyspareunia assessment outcomes. RESULTS: Our pilot will provide initial data on the acceptability and effectiveness of the buffer and the feasibility of the study methodology. The results from our study are expected to be submitted for publication by the spring of 2023. As of September 2021, we have consented 31 couples into the study. CONCLUSIONS: Our study will provide preliminary evidence for the self-assessment and management of endometriosis-associated deep dyspareunia. The findings will inform the decision to proceed to a definitive RCT. TRIAL REGISTRATION: ClinicalTrials.gov NCT04370444; https://clinicaltrials.gov/ct2/show/NCT04370444. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/39834.
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ABSTRACT: A key clinical problem is identifying the patient with endometriosis whose pain is complicated by central nervous system sensitization, where conventional gynecologic treatment (eg, hormonal therapy or surgery) may not completely alleviate the pain. The Central Sensitization Inventory (CSI) is a questionnaire previously validated in the chronic pain population. The objective of this study was an exploratory proof-of-concept to identify a CSI cutoff in the endometriosis population to discriminate between individuals with significant central contributors (identified by central sensitivity syndromes [CSS]) to their pain compared to those without. We analyzed a prospective data registry at a tertiary referral center for endometriosis, and included subjects aged 18 to 50 years with endometriosis who were newly or re-referred to the center in 2018. The study sample consisted of 335 subjects with a mean age of 36.0 ± 7.0 years. An increasing number of CSS was significantly correlated with dysmenorrhea, deep dyspareunia, dyschezia, and chronic pelvic pain scores (P < 0.001), and with the CSI score (0-100) (r = 0.731, P < 0.001). Receiver operating characteristic analysis indicated that a CSI cutoff of 40 had a sensitivity of 78% (95% CI: 72.7%-84.6%) and a specificity of 80% (95% CI: 70.3%-84.5%) for identifying a patient with endometriosis with ≥3 CSS. In the group with CSI ≥ 40, 18% retrospectively self-reported pain nonresponsive to hormonal therapy and 40% self-reported daily pain, compared with 6% and 20% in the CSI < 40 group (P = 0.003 and 0.002, respectively). In conclusion, a CSI ≥ 40 may be a practical tool to help identify patients with endometriosis with pain contributors related to central nervous system sensitization.
Subject(s)
Central Nervous System Sensitization , Chronic Pain , Endometriosis , Pelvic Pain , Adolescent , Adult , Chronic Pain/etiology , Chronic Pain/physiopathology , Constipation/etiology , Dyspareunia/etiology , Endometriosis/complications , Endometriosis/physiopathology , Female , Humans , Middle Aged , Pelvic Pain/etiology , Pelvic Pain/physiopathology , Prospective Studies , Retrospective Studies , Young AdultABSTRACT
BACKGROUND: The COVID-19 pandemic and pandemic response created novel challenges for abortion services. Canada was uniquely positioned to transition to telemedicine because internationally common restrictions on abortion medication were removed before the pandemic. OBJECTIVE: We sought to characterize the experiences of abortion health care professionals in Canada during the COVID-19 pandemic and the impact of the pandemic response on abortion services. METHODS: We conducted a sequential mixed methods study between July 2020 and January 2021. We invited physicians, nurse practitioners and administrators to participate in a cross-sectional survey containing an open-ended question about the impact of the pandemic response on abortion care. We employed an inductive codebook thematic analysis, which informed the development of a second, primarily quantitative survey. RESULTS: Our initial survey had 307 respondents and our second had 78. Fifty-three percent were family physicians. Our first survey found respondents considered abortion access essential. We identified three key topicss: access to abortion care was often maintained despite pandemic-related challenges (e.g. difficulty obtaining tests, additional costs); change of practice to low-touch medication abortion care and provider perceptions of patient experience, including shifting demand, telemedicine acceptability and increased rural access. The second survey indicated uptake of telemedicine medication abortion among 89% of participants except in Quebec, where regulations meant procedures were nearly exclusively surgical. Restrictions did not delay care according to 76% of participants. CONCLUSIONS: Canadian health care professionals report their facilities deemed abortion an essential service. Provinces and territories, except Quebec, described a robust pandemic transition to telemedicine to ensure access to services. PODCAST: An accompanying podcast is available in the Supplementary Data, in which the authors Dr Madeleine Ennis and Kate Wahl discuss their research on how family planning care and access to abortion services have changed during the COVID-19 pandemic.
Access to abortion care was challenged by the response to COVID-19. Canada had fewer restrictions on medical abortion than many other countries when the pandemic began. The goal of this study was to describe the experiences of health care practitioners providing abortion in Canada and the impact of the pandemic and the pandemic response measures on abortion services. We conducted two surveys of physicians, nurse practitioners and administrators between July 2020 and January 2021. Most of the health care practitioners who participated reported that medical and surgical abortion care were essential and that, except in the province of Quebec, there was a rapid transition to virtual telemedicine care for first trimester abortions. Several practitioners said that virtual care made abortion more accessible. Other practitioners reported that it was challenging to order certain tests, access operating room facilities or make referrals for late second trimester cases. Practitioners felt that patients had strong fears about COVID-19 exposure and reported that limited contraception access was increasingly a reason for seeking abortion care. The results of the study suggested that abortion was considered essential and that the pandemic instigated a transition to virtual care in all provinces and territories except Quebec.
Subject(s)
Abortion, Induced/statistics & numerical data , Attitude of Health Personnel , COVID-19/epidemiology , Adult , Canada/epidemiology , Cross-Sectional Studies , Female , Health Services Accessibility , Humans , Male , Pandemics , SARS-CoV-2 , Surveys and Questionnaires , TelemedicineABSTRACT
BACKGROUND: Since Canadian drug regulatory approval of mifepristone for medical abortion in 2015 and its market availability in January 2017, the role of pharmacists in abortion provision has changed rapidly. We sought to identify the factors that influenced the initiation and provision of medical abortion from the perspectives of Canadian pharmacists, bridging two frameworks - Diffusion of Innovation in Health Service Organizations and integrated knowledge translation. METHODS: We conducted one-on-one semi-structured interviews with pharmacists residing in Canada who intended to stock and dispense mifepristone within the first year of availability. Our data collection, analysis, and interpretation were guided by reflexive thematic analysis and supported by an integrated knowledge translation partnership with pharmacy stakeholders. RESULTS: We completed interviews with 24 participants from across Canada: 33% had stocked and 21% had dispensed mifepristone. We found that pharmacists were willing and able to integrate medical abortion care into their practice and that those who had initiated practice were satisfied with their dispensing experience. Our analysis indicated that several key Diffusion of Innovation constructs impacted the uptake of mifepristone, including: innovation (relative advantage, complexity and compatibility, technical support), system readiness (innovation-system fit, dedicated time, resources), diffusion and dissemination (expert opinion, boundary spanners, champions, social networks, peer opinions), implementation (external collaboration), and linkage. Participants' experiences suggest that integrated knowledge translation facilitated evidence-based changes to mifepristone dispensing restrictions, and communication of those changes to front line pharmacists. CONCLUSIONS: We illustrate how Diffusion of Innovation and integrated knowledge translation may work together as complimentary frameworks for implementation science research. Unlike in the USA, UK, and other highly regulated settings globally, pharmacists in Canada are permitted to dispense mifepristone for medical abortion. We contribute to literature that shows that mifepristone dispensed outside of hospitals, clinics, and medical offices is safe and acceptable to both patients and prescribers. This finding is of particular importance to the current COVID-19 pandemic response and calls for continued and equitable access to abortion care in primary practice.
Subject(s)
Abortifacient Agents, Steroidal/administration & dosage , Abortion, Induced/methods , Diffusion of Innovation , Mifepristone/administration & dosage , Pharmacists/statistics & numerical data , Translational Research, Biomedical/methods , Canada , Humans , Interviews as TopicABSTRACT
OBJECTIVES: We sought to review the literature on the access experiences and attitudes toward abortion among youth experiencing homelessness in the United States. METHODS: We conducted a systematic review of peer-reviewed literature published from 2001 to 2019. We included qualitative studies involving US participants that focused on access experiences, views, or accounts of unintended pregnancy and/or abortion among youth experiencing homelessness. We excluded studies published before 2001 as that was the year mifepristone medication abortion was made available in the US and we aimed to investigate experiences of access to both medical and surgical abortion options. RESULTS: Our thematic analysis of the data resulted in five key themes that characterize the abortion attitudes and access experiences of youth experiencing homelessness: (1) engaging in survival sex and forced sex, (2) balancing relationships and autonomy, (3) availability does not equal access, (4) attempting self-induced abortions using harmful methods, and (5) feeling resilient despite traumatic unplanned pregnancy experiences. CONCLUSIONS: Youth experiencing homelessness experience barriers to abortion access across the US, including in states with a supportive policy context and publicly funded abortion services. In the absence of accessible services, youth may consider harmful methods of self-induced abortion. Improved services should be designed to offer low-barrier abortion care with the qualities that youth identified as important to them, including privacy and autonomy.
Subject(s)
Abortion, Induced/psychology , Attitude , Ill-Housed Persons/psychology , Female , Humans , Personal Autonomy , Pregnancy , Resilience, Psychological , Sexual BehaviorABSTRACT
Endometriosis is an enigmatic, painful, complex disease that affects approximately 1 million people in Canada. The disease can involve multiple organ systems, often resulting in debilitating chronic pain and infertility. Social, medical, geographic, and other factors are implicated in years-long diagnostic delays and may limit access to care. An integrated approach from bench to bedside to community is urgently required. A pan-Canadian collaboration among patients, clinicians and researchers will improve endometriosis awareness, provide best practices, and link research across Canada.
Subject(s)
Endometriosis , Evidence-Based Practice , Health Policy , Infertility , Patient-Centered Care , Canada , Cooperative Behavior , Endometriosis/diagnosis , Endometriosis/therapy , Female , Humans , Interprofessional RelationsABSTRACT
INTRODUCTION: Dyspareunia has been called the neglected symptom of endometriosis and is underexplored in clinical and research contexts. Understanding the physical experience and patient-important aspects of endometriosis-associated sexual pain can help advance valid measurement of this symptom. AIMS: The goal of this research was to characterize the physical experience of endometriosis-associated dyspareunia in the words of people affected by this condition. METHODS: This was a qualitative descriptive study that included participants with current or previous endometriosis-associated dyspareunia recruited from a data registry. Data collection involved semistructured interviews that began with an open-ended question about dyspareunia followed by prompts related to the nature of sexual pain. MAIN OUTCOME MEASURES: Interviews transcripts were subjected to qualitative content analysis using a priori (pain site, onset, character, radiation, associations, time course, and exacerbating/relieving factors) and emergent themes. RESULTS: A total of 17 participants completed interviews. Mean participant age was 33.3 years and most were identified as white, college-educated, heterosexual, and partnered. Location, onset, and character were important; interrelated features of endometriosis-associated dyspareunia were: (i) introital pain began with initial penetration and had pulling, burning, and stinging qualities and (ii) pelvic pain was experienced with deep penetration or in certain positions and was described as sharp, stabbing, and cramping. Dyspareunia ranged from mild to severe, had a marked psychosocial impact for some participants, and was managed using a variety of treatments and strategies. CONCLUSION: The endometriosis-associated dyspareunia experienced by participants was heterogenous in presentation, severity, and impact. Our findings have implications for the development of valid patient-reported outcome measures of this symptom. Wahl KJ, Imtiaz S, Lisonek M, et al. Dyspareunia in Their Own Words: A Qualitative Description of Endometriosis-Associated Sexual Pain. Sex Med 2021;9:100274.
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PURPOSE: Access to family planning health services in Canada has been historically inadequate and inequitable. A potential solution appeared when Health Canada approved mifepristone, the gold standard for medical abortion, in July 2015. We sought to investigate the factors that influence successful initiation and ongoing provision of medical abortion services among Canadian health professionals and how these factors relate to abortion policies, systems, and service access throughout Canada. METHODS: We conducted 1-on-1 semistructured interviews with a national sample of abortion-providing and nonproviding physicians and health system stakeholders in Canadian health care settings. Our data collection, thematic analysis, and interpretation were guided by Diffusion of Innovation theory. RESULTS: We conducted interviews with 90 participants including rural practitioners and those with no previous abortion experience. In the course of our study, Health Canada removed mifepristone restrictions. Our results suggest that Health Canada's initial restrictions discouraged physicians from providing mifepristone and were inconsistent with provincial licensing standards, thereby limiting patient access. Once deregulated, remaining factors were primarily related to local and regional implementation processes. Participants held strong perceptions that mifepristone was the new standard of care for medical abortion in Canada and within the scope of primary care practice. CONCLUSION: Health Canada's removal of mifepristone restrictions facilitated the implementation of abortion care in the primary care setting. Our results are unique because Canada is the first country to facilitate provision of medical abortion in primary care via evidence-based deregulation of mifepristone.
Subject(s)
Abortion, Legal/psychology , Attitude of Health Personnel , Health Plan Implementation/statistics & numerical data , Physicians/psychology , Primary Health Care/statistics & numerical data , Abortion, Legal/legislation & jurisprudence , Abortion, Legal/methods , Canada , Female , Humans , Mifepristone/therapeutic use , Pregnancy , Qualitative ResearchABSTRACT
INTRODUCTION: Deep dyspareunia is a cardinal symptom of endometriosis, and as many as 40% of people with this condition experience comorbid superficial dyspareunia. AIM: To evaluate the relationship between sexual pain and infertility concerns among women with endometriosis. METHODS: This is a cross-sectional study conducted at a university-based tertiary center for endometriosis. 300 reproductive-aged participants in the prospective Endometriosis Pelvic Pain Interdisciplinary Cohort (ClinicalTrials.gov Identifier: NCT02911090) with histologically confirmed endometriosis were included (2013-2017). MAIN OUTCOME MEASURE: The total score on the infertility concerns module of the Endometriosis Health Profile-30 categorized into 5 groups (0, 1-4, 5-8, 9-12, 13-16). RESULTS: The odds of infertility concerns did not increase with severity of deep dyspareunia (odds ratio = 1.02, 95% CI: 0.95-1.09, P = .58). However, the odds of infertility concerns increased with severity of superficial dyspareunia (odds ratio = 1.09, 95% CI: 1.02-1.16, P = .011); this relationship persisted after adjusting for endometriosis-specific factors, infertility risk factors, reproductive history, and demographic characteristics (adjusted odds ratio [AOR] = 1.14, 95% CI: 1.06-1.24, P < .001). Other factors in the model independently associated with increased infertility concerns were previous difficulty conceiving (AOR = 2.09, 95% CI 1.04-4.19, P = .038), currently trying to conceive (AOR = 5.23, 95% CI 2.77-9.98, P < .001), nulliparity (AOR = 3.21, 95% CI 1.63-6.41, P < .001), and younger age (AOR = 0.94, 95% CI: 0.89-0.98, P = .005). CONCLUSION: Severity of superficial dyspareunia, but not deep dyspareunia, was associated with increased odds of infertility concerns among women with endometriosis. Strengths of the study included the use of a validated measure of infertility concerns and disaggregation of sexual pain into deep and superficial dyspareunia. Limitations included the setting of a tertiary center for pelvic pain, which affects generalizability to fertility clinic and primary care settings. Women experiencing introital dyspareunia, who can have difficulties with achieving penetrative intercourse, may be concerned about their future fertility and should be counselled appropriately. Wahl KJ, Orr NL, Lisonek M, et al. Deep Dyspareunia, Superficial Dyspareunia, and Infertility Concerns Among Women With Endometriosis: A Cross-Sectional Study. Sex Med 2020;8:274-281.
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INTRODUCTION: Deep dyspareunia, a common symptom in endometriosis, has previously been associated with bladder and/or pelvic floor tenderness (BPFT), which suggests a role for central nervous system sensitization. The Central Sensitization Inventory (CSI, 0-100) is a validated self-reported scale for patients with central sensitization. AIM: The objective of this study was to phenotype deep dyspareunia using BPFT and the CSI. METHODS: The methods included cross-sectional analysis from a prospective registry from January 2018 to June 2018 at a tertiary center for endometriosis (ClinicalTrials.gov #NCT02911090). Included were women aged 18-50 years with endometriosis (previously surgically diagnosed, current visualized endometrioma on ultrasound, or current palpable or visualized nodule on ultrasound), who were newly or re-referred to the center. Severity of deep dyspareunia was self-reported using an 11-point numeric rating scale (0 = no pain; 10 = worst pain imaginable), categorized as no or low deep dyspareunia (0-4) and high deep dyspareunia (5-10). We identified the subgroup with high deep dyspareunia and presence of BPFT, where we hypothesized a central component of the sexual pain. This subgroup was compared with 2 other subgroups: no or low deep dyspareunia and high deep dyspareunia but no BPFT. The CSI was compared between the groups using analysis of variance, followed by post hoc testing (P < .05). MAIN OUTCOME MEASURE: The main outcome measure was the CSI score ranging from 0 to 100. RESULTS: Data from 163 women with endometriosis were analyzed. The mean age of this cohort was 36.4 ± 6.8 years, and the mean CSI score was 41.0 ± 18.6. 37 percent (61/163) had high deep dyspareunia and BPFT; 29% (47/163) had high deep dyspareunia and no BPFT; and 34% (55/163) had no or low deep dyspareunia. The CSI significantly differed between the 3 groups (analysis of variance: F = 22.4, P < .001). In post hoc testing, the CSI was higher in women with high deep dyspareunia and BPFT (51.3 ± 16.9), compared with women with no or low deep dyspareunia (30.9 ± 15.4, P < .001) and compared with women with high deep dyspareunia but no BPFT (39.4 ± 17.2, P = .001). CLINICAL IMPLICATIONS: The CSI could be used to classify and phenotype patients with endometriosis-associated sexual pain. STRENGTH & LIMITATIONS: Strengths include a prospective registry with integrated pain scores, validated questionnaires, and physical examination findings. Limitations include the lack of quantitative sensory testing for central sensitization. CONCLUSIONS: In women with endometriosis, the subgroup with high deep dyspareunia and bladder and/or pelvic floor tenderness had a significantly higher score on the CSI than other subgroups, suggesting that this group may have a central component to their sexual pain. Orr NL, Wahl KJ,Noga H, et al. Phenotyping Sexual Pain in Endometriosis Using the Central Sensitization Inventory. J Sex Med 2020;17:761-770.
Subject(s)
Central Nervous System Sensitization , Dyspareunia/etiology , Endometriosis/complications , Pelvic Pain/etiology , Adult , Cohort Studies , Cross-Sectional Studies , Female , Humans , Pain Measurement , Pelvic Floor , Sexual Behavior , Surveys and QuestionnairesABSTRACT
OBJECTIVE: This study sought to identify factors independently associated with a negative impression of the medical profession in patients with endometriosis who were presenting to a tertiary referral centre. METHODS: A cross-sectional analysis was conducted on a prospective data registry between December 2013 and June 2017 at a tertiary referral centre for pelvic pain and endometriosis. The main outcome variable, negative impression about the medical profession, was measured with the four-item subscale of the Endometriosis Health Profile-30 and divided into three groups: no (0), some (1-8), and many (9-16) negative impressions. Patients with a surgical and histological diagnosis of endometriosis were included. Postmenopausal women were excluded. Bivariate analyses determined significant associations (P < 0.05) between variables from the registry and the main outcome. Variables with a significant association were put into ordinal logistic regression with sequential backwards elimination. RESULTS: Negative impression of the medical profession was independently associated with previous surgery that did not help symptoms (adjusted odds ratio [aOR] 1.77; 95% confidence interval [CI] 1.09-2.87; Pâ¯=â¯0.021), presentation to an emergency room in the past 3 months (aOR 1.90; 95% CI 1.17-3.07; Pâ¯=â¯0.009), and previous visits to a complementary health care provider (aOR 2.16; 95% CI 1.42-3.29; P < 0.0005), while controlling for an endometriosis pain-related morbidity composite variable. CONCLUSION: Negative perception of the medical profession in women with endometriosis was associated with surgical treatment failure, emergency room use, and accessing complementary health care. Each identified factor offers an opportunity for intervention to improve the perception of the medical profession among women with endometriosis.
Subject(s)
Endometriosis/therapy , Patient Satisfaction , Pelvic Pain/physiopathology , Physician-Patient Relations , Physicians/psychology , Adult , Attitude of Health Personnel , Cross-Sectional Studies , Female , Humans , Perception , Prospective Studies , Quality of Health CareABSTRACT
INTRODUCTION: Dyspareunia has been traditionally divided into superficial (introital) dyspareunia and deep dyspareunia (pain with deep penetration). While deep dyspareunia can coexist with a variety of conditions, recent work in endometriosis has demonstrated that coexistence does not necessarily imply causation. Therefore, a reconsideration of the literature is required to clarify the pathophysiology of deep dyspareunia. AIMS: To review the pathophysiology of deep dyspareunia, and to propose future research priorities. METHODS: A narrative review after appraisal of published frameworks and literature search with the terms (dyspareunia AND endometriosis), (dyspareunia AND deep), (dyspareunia AND (pathophysiology OR etiology)). MAIN OUTCOME VARIABLE: Deep dyspareunia (present/absent or along a pain severity scale). RESULTS: The narrative review demonstrates potential etiologies for deep dyspareunia, including gynecologic-, urologic-, gastrointestinal-, nervous system-, psychological-, and musculoskeletal system-related disorders. These etiologies can be classified according to anatomic mechanism, such as contact with a tender pouch of Douglas, uterus-cervix, bladder, or pelvic floor, with deep penetration. Etiologies of deep dyspareunia can also be stratified into 4 categories, as previously proposed for endometriosis specifically, to personalize management: type I (primarily gynecologic), type II (nongynecologic comorbid conditions), type III (central sensitization and genito-pelvic pain/penetration disorder), and type IV (mixed). We also identified gaps in the literature, such as lack of a validated patient-reported questionnaire or an objective measurement tool for deep dyspareunia and clinical trials not powered for sexual outcomes. CONCLUSION: We propose the following research priorities for deep dyspareunia: deep dyspareunia measurement tools, inclusion of the population avoiding intercourse due to deep dyspareunia, nongynecologic conditions in the generation of deep dyspareunia, exploration of sociocultural factors, clinical trials with adequate power for deep dyspareunia outcomes, partner variables, female sexual response, pathways between psychological factors and deep dyspareunia, and personalized approaches to deep dyspareunia. Orr N, Wahl K, Joannou A, et al. Deep Dyspareunia: Review of Pathophysiology and Proposed Future Research Priorities. Sex Med Rev 2020;8:3-17.