Patient experiences of endometriosis diagnosis: A mixed methods approach.

OBJECTIVE: To examine patient-described experiences of endometriosis diagnosis. DESIGN: Mixed-methods study. SETTING: Online patient-led endometriosis support groups. POPULATION OR SAMPLE: People with endometriosis aged over 18. METHODS: A survey with qualitative and quantitative questions was distributed through online patient-led endometriosis support groups. Descriptive statistics were used to analyse quantitative data, and thematic analysis was used for qualitative responses. Quantitative and qualitative data were triangulated to examine patient experiences of endometriosis diagnosis across age groups. MAIN OUTCOME MEASURES: Experiences of endometriosis diagnosis among people with endometriosis. RESULTS: A total of 2017 people with endometriosis from 63 countries responded to the questionnaire. Patients experienced an average delay of 3.7 years between symptom onset and first presentation of symptoms to a physician (the care-seeking delay) and an average delay of 5.8 years between first presentation of symptoms to a physician and diagnosis of endometriosis (the healthcare-related delay). Patients experienced an average total diagnostic delay of 9.6 years. Participants aged over 35 at the time of the study reported significantly longer times to receive an endometriosis diagnosis (mean 10.7, 95% confidence interval [CI] 10.2-11.2) compared with participants age 18-24 (6.8, 95% CI 6.1-7.5 years). The qualitative analysis identified the following themes: physicians normalised endometriosis symptoms, patients felt their symptoms were ignored by physicians because they were considered unreliable, and participant character attributes (e.g. age, appearance, weight or physical ability) led to clinician dismissal. CONCLUSIONS: People with endometriosis of all age groups reported pervasive negative healthcare experiences during their adolescence. Patients experience delays in seeking care and in receiving a diagnosis once presenting for care.

Gynaecological care of women with chronic pelvic pain: Patient perspectives and care preferences.

OBJECTIVE: To explore the experiences and care preferences of women with chronic pelvic pain, with or without a history of sexual trauma, seeking gynaecological care. DESIGN: Qualitative study. SETTING: Ambulatory endometriosis centre. POPULATION OR SAMPLE: Women aged 18-55 years with chronic pelvic pain. METHODS: Baseline demographics and sexual trauma history were obtained, and participants were assigned to focus groups according to a positive (four groups, 13 participants) or negative (two groups, nine participants) screen for a history of sexual trauma. The focus groups were led by a clinical psychologist and a gynaecological surgeon and consisted of semi-structured interviews. The interviews were audio-recorded and transcribed, and the transcripts were coded in NVivo 12. MAIN OUTCOME MEASURES: Content analysis was used to derive themes according to the participants' own words. RESULTS: Participants with chronic pelvic pain, with or without a history of sexual trauma, experienced delay in diagnosis and repetitive dismissals by clinicians. Participants' experiences of dismissals included: clinicians not listening, insufficient allocation of time to appointments and perceived redundant medical testing (i.e. sexually transmitted infection testing, urine cultures, ultrasounds). Participants identified clinician interactions as pivotal in coping with both pelvic pain and sexual abuse. Participants also provided feedback regarding trauma-informed practices and care delivery specific to patients with chronic pelvic pain. CONCLUSION: Patients with chronic pelvic pain, with or without a history of sexual trauma, report negative experiences when interacting with the healthcare system. They have clear needs and preferences regarding gynaecological care and provide feasible suggestions for improving care delivery.

Appendectomy in the surgical management of women with endometriosis and pelvic pain.

OBJECTIVE: To evaluate the role of appendectomy in surgical excision of endometriosis and to assess complications associated with appendectomy. METHODS: Retrospective study of women undergoing appendectomy for pelvic pain and/or endometriosis during a primary gynecologic procedure. RESULTS: Record review was performed for 609 women who underwent appendectomy between 2013 and 2019 for pelvic pain (6.9%, 42/609), stage I-II endometriosis (63.7%, 388/609), or stage III-IV endometriosis (29.4%, 179/609). Appendiceal endometriosis (AppE) was present in 14.9% (91/609); 2.4% without endometriosis (1/42, reference group), 7.0% with stage I-II endometriosis (27/388, odds ratio [OR] 3.06, 95% confidence interval [CI] 0.41-23.11, P = 0.278), and 35.2% with stage III-IV endometriosis (63/179, OR 22.24, 95% CI 2.99-165.40, P = 0.002). AppE was significantly associated with endometriosis present in other locations (OR 5.27, 95% CI 2.66-10.43, P < 0.001). The predicted probability of identifying AppE ranged from 6% with 0 positive endometriosis sites to 56% when 4 or more sites were identified. There were no complications related to the performance of an appendectomy. CONCLUSION: Women with chronic pelvic pain and/or endometriosis have an increased risk of AppE. Modern appendectomy at the time of gynecologic surgery is safe, with no associated complications in this study. Our findings support the consideration of appendectomy as part of the comprehensive surgical management of endometriosis.

Appendiceal Endometriosis: Is Diagnosis Dependent on Pathology Evaluation? A Prospective Cohort Study.

STUDY OBJECTIVE: To evaluate the diagnosis of appendiceal endometriosis (AppE) in coincidental appendectomy specimens using standard versus modified histopathologic analysis. DESIGN: Prospective analysis of 300 consecutive patients undergoing coincidental appendectomy at the time of a primary gynecologic procedure. SETTING: Academic tertiary referral hospital in the northeastern United States. PATIENTS: Women aged 22 to 52 years undergoing gynecologic surgery for the management of endometriosis or chronic pelvic pain between 2013 and 2015. INTERVENTIONS: Each appendix specimen underwent standard pathologic analysis with 4 sections performed. Modified pathologic analysis, consisting of standard analysis plus serial sectioning and complete evaluation of the appendix and mesoappendix, was then performed. The first pathologist reviewed all the slides to render a diagnosis. The slides of the subjects with abnormal pathology were rereviewed. On rereview, the diagnosis was confirmed, and the data on which protocol, standard or modified, achieved the diagnosis was rendered. The pathologist performing the second review was blinded to whether the slides from the standard or modified histopathology protocol achieved the original diagnosis. This allowed each specimen to serve as its own control. MEASUREMENTS AND MAIN RESULTS: The primary outcome is the detection of AppE. The standard analysis identified endometriosis in 7.7% (n = 23) of appendiceal specimens, whereas the modified analysis identified endometriosis in 10.0% (n = 30; odds ratio 1.3; confidence interval, 1.1-1.7; p = .01). When all pathology findings were combined, the standard analysis identified abnormal pathology in 9.3% (n = 28) of the specimens, whereas the modified analysis identified abnormal pathology in 12.3% (n = 37; odds ratio 1.4; confidence interval, 1.1-1.7; p <.01). Other abnormal appendiceal pathology identified in this study included polyps, neuroendocrine tumors, and acute appendicitis. The average number of slides required for the standard analysis was 1.4 compared with 4.9 slides for the modified analysis. At this institution, the average increase in the cost of slide production for the modified protocol was $12.07. CONCLUSION: Modified pathologic analysis resulted in a significantly higher rate of diagnosis of endometriosis and abnormal pathology in coincidental appendectomy performed during a primary gynecologic procedure for endometriosis and/or chronic pelvic pain. The use of a standard pathologic protocol likely contributes to underdiagnosis of AppE. The implementation of a modified histopathologic protocol should be considered for improving diagnosis rates of appendiceal pathology in coincidental appendectomy specimens.

Utilization of apical vaginal support procedures at time of inpatient hysterectomy performed for benign conditions: a national estimate.

BACKGROUND: Apical vaginal support is considered the keystone of pelvic organ support. Level I evidence supports reestablishment of apical support at time of hysterectomy, regardless of whether the hysterectomy is performed for prolapse. National rates of apical support procedure performance at time of inpatient hysterectomy have not been well described. OBJECTIVE: We sought to estimate trends and factors associated with use of apical support procedures at time of inpatient hysterectomy for benign indications in a large national database. STUDY DESIGN: The National (Nationwide) Inpatient Sample was used to identify hysterectomies performed from 2004 through 2013 for benign indications. International Classification of Diseases, Ninth Revision, Clinical Modification codes were used to select both procedures and diagnoses. The primary outcome was performance of an apical support procedure at time of hysterectomy. Descriptive and multivariable analyses were performed. RESULTS: There were 3,509,230 inpatient hysterectomies performed for benign disease from 2004 through 2013. In both nonprolapse and prolapse groups, there was a significant decrease in total number of annual hysterectomies performed over the study period (P < .0001). There were 2,790,652 (79.5%) hysterectomies performed without a diagnosis of prolapse, and an apical support procedure was performed in only 85,879 (3.1%). There was a significant decrease in the proportion of hysterectomies with concurrent apical support procedure (high of 4.0% in 2004 to 2.5% in 2013, P < .0001). In the multivariable logistic regression model, increasing age, hospital type (urban teaching), hospital bed size (large and medium), and hysterectomy type (vaginal and laparoscopically assisted vaginal) were associated with performance of an apical support procedure. During the study period, 718,578 (20.5%) inpatient hysterectomies were performed for prolapse diagnoses and 266,743 (37.1%) included an apical support procedure. There was a significant increase in the proportion of hysterectomies with concurrent apical support procedure (low of 31.3% in 2005 to 49.3% in 2013, P < .0001). In the multivariable logistic regression model, increasing age, hospital type (urban teaching), hospital bed size (medium and large), and hysterectomy type (total laparoscopic and laparoscopic supracervical) were associated with performance of an apical support procedure. CONCLUSION: This national database study demonstrates that apical support procedures are not routinely performed at time of inpatient hysterectomy regardless of presence of prolapse diagnosis. Educational efforts are needed to increase awareness of the importance of reestablishing apical vaginal support at time of hysterectomy regardless of indication.

Urothelial generation and regeneration in development, injury, and cancer.

Homeostatic maintenance and repair of the urothelium upon injury are required for a functional bladder in both healthy and disease conditions. Understanding the cellular and molecular mechanisms underlying the urothelial regenerative response is key to designing strategies for tissue repair and ultimately treatments for urologic diseases including urinary tract infections, voiding dysfunction, painful bladder syndrome, and bladder cancer. In this article, we review studies on urothelial ontogeny during development and regeneration following various injury modalities. Signaling pathways involved in urothelial regeneration and in urothelial carcinogenesis are also discussed. Developmental Dynamics 246:336-343, 2017. © 2016 Wiley Periodicals, Inc.

Care of the adult patient with Down syndrome.

Individuals with Down syndrome have an increased risk for many conditions, including cardiovascular disease, cancer, infections, and osteoporosis, and endocrine, neurological, orthopedic, auditory, and ophthalmic disorders. They also are at increased risk for abuse and human rights violations and receive fewer screenings and interventions than the population without Down syndrome. In this literature review, the most common health conditions associated with Down syndrome are examined, along with the topics of sexual abuse, menstrual hygiene, contraception, and human rights. Clinical guidelines for this population are summarized in an effort to assist practicing physicians in improving their provision of health care to the adult patient with Down syndrome.