Co-occurrence of immune-mediated conditions and endometriosis among adolescents and adult women.

PROBLEM: Associations between immune dysfunction conditions (eg, systemic lupus erythematous, rheumatoid arthritis) and endometriosis have been observed in adult women, but not assessed among a younger population. We investigated the association between immune-mediated conditions and endometriosis among young women. METHOD OF STUDY: This cross-sectional analysis in the Women's Health Study: From Adolescence to Adulthood included 551 participants with surgically diagnosed endometriosis (median age=19) and 652 controls without endometriosis (median age=24). Participants completed an expanded Endometriosis Phenome and Biobanking Harmonization Project questionnaire. We used logistic regression to estimate odds ratios (ORs) and 95% confidence intervals (CIs) to investigate the associations between autoimmune/inflammatory, atopic, chronic pain/fatigue, and endocrine disorders with endometriosis, adjusting for confounders. RESULTS: Participants with any autoimmune and/or inflammatory condition had an increased odds of co-occurring endometriosis (OR: 1.87; CI: 0.92-3.80), as did participants with allergies (OR: 1.76; CI: 1.32-2.36), asthma (OR: 1.35; CI: 0.97-1.88), chronic fatigue syndrome and/or fibromyalgia (OR: 5.81; CI: 1.89-17.9), or previous mononucleosis (OR: 1.75; CI: 1.14-2.68). Odds of endometriosis were lower among participants with eczema (OR: 0.68; CI: 0.44-1.04). We observed a positive trend between the number of immune-mediated conditions and the odds of endometriosis (p-trend=0.0002). Endocrine disorders were not associated with endometriosis. CONCLUSIONS: Among this population of adolescents and adult women, endometriosis was more likely among participants with autoimmune and/or inflammatory diseases, allergies, asthma, previous mononucleosis infection, and chronic fatigue and/or fibromyalgia. We observed that an increasing number of immune-mediated conditions were positively associated with endometriosis risk. It is important for clinicians who care for adolescents and women with these conditions to consider endometriosis as a comorbidity.

Evaluating an Intervention to Improve Communication Between Oncology Clinicians and Patients With Life-Limiting Cancer: A Cluster Randomized Clinical Trial of the Serious Illness Care Program.

IMPORTANCE: Earlier clinician-patient conversations about patients' values, goals, and preferences in serious illness (ie, serious illness conversations) are associated with better outcomes but occur inconsistently in cancer care. OBJECTIVE: To evaluate the efficacy of a communication quality-improvement intervention in improving the occurrence, timing, quality, and accessibility of documented serious illness conversations between oncology clinicians and patients with advanced cancer. DESIGN, SETTING, PARTICIPANTS: This cluster randomized clinical trial in outpatient oncology was conducted at the Dana-Farber Cancer Institute and included physicians, advanced-practice clinicians, and patients with cancer who were at high risk of death. MAIN OUTCOMES AND MEASURES: The primary outcomes (goal-concordant care and peacefulness at the end of life) are published elsewhere. Secondary outcomes are reported herein, including (1) documentation of at least 1 serious illness conversation before death, (2) timing of the initial conversation before death, (3) quality of conversations, and (4) their accessibility in the electronic medical record (EMR). RESULTS: We enrolled 91 clinicians (48 intervention, 43 control) and 278 patients (134 intervention, 144 control). Of enrolled patients, 58% died during the study (n=161); mean age was 62.3 years (95% CI, 58.9-65.6 years); 55% were women (n=88). These patients were cared for by 76 of the 91 enrolled clinicians (37 intervention, 39 control); years in practice, 11.5 (95% CI, 9.2-13.8); 57% female (n=43). Medical record review after patients' death demonstrated that a significantly higher proportion of intervention patients had a documented discussion compared with controls (96% vs 79%, P = .005) and intervention conversations occurred a median of 2.4 months earlier (median, 143 days vs 71 days, P < .001). Conversation documentation for intervention patients was significantly more comprehensive and patient centered, with a greater focus on values or goals (89% vs 44%, P < .001), prognosis or illness understanding (91% vs 48%, P < .001), and life-sustaining treatment preferences (63% vs 32%, P = .004). Documentation about end-of-life care planning did not differ between arms (80% intervention vs 68% control, P = .08). Significantly more intervention patients had documentation that was accessible in the EMR (61% vs 11%, P < .001). CONCLUSIONS AND RELEVANCE: This communication quality-improvement intervention resulted in more, earlier, better, and more accessible serious illness conversations documented in the EMR. To our knowledge, this is the first such study to demonstrate improvement in all 4 of these outcomes. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT01786811.

A Descriptive Analysis of End-of-Life Conversations With Long-Term Glioblastoma Survivors.

BACKGROUND: Early, high-quality serious illness (SI) conversations are critical for patients with glioblastoma (GBM) but are often mistimed or mishandled. OBJECTIVE: To describe the prevalence, timing, and quality of documented SI conversations and evaluate their focus on patient goals/priorities. DESIGN/PARTICIPANTS: Thirty-three patients with GBM enrolled in the control group of a randomized controlled trial of a communication intervention and were followed for 2 years or until death. At baseline, all patients answered a validated question about preferences for life-extending versus comfort-focused care and completed a Life Priorities Survey about their goals/priorities. In this secondary analysis, retrospective chart review was performed for 18 patients with GBM who died. Documented SI conversations were systematically identified and evaluated using a codebook reflecting 4 domains: prognosis, goals/priorities, end-of-life planning, and life-sustaining treatments. Patient goals/priorities were compared to documentation. MEASUREMENTS/RESULTS: At baseline, 16 of 24 patients preferred life-extending care. In the Life Priorities Survey, goals/priorities most frequently ranked among the top 3 were "Live as long as possible," "Be mentally aware," "Provide support for family," "Be independent," and "Be at peace." Fifteen of 18 patients had at least 1 documented SI conversation (range: 1-4). Median timing of the first documented SI conversation was 84 days before death (range: 29-231; interquartile range: 46-119). Fifteen patients had documentation about end-of-life planning, with "hospice" and "palliative care" most frequently documented. Five of 18 patients had documentation about their goals. CONCLUSION: Patients with GBM had multiple goals/priorities with potential treatment implications, but documentation showed SI conversations occurred relatively late and infrequently reflected patient goals/priorities.

A Systematic Intervention To Improve Serious Illness Communication In Primary Care.

Improving communication about goals and values for patients with advancing serious illness nearing the end of life is a key opportunity to improve the value of care. The Serious Illness Care Program, implemented at primary care clinics affiliated with Brigham and Women's Hospital in Boston, Massachusetts, is a multicomponent intervention designed to support best practices in communication by clinicians to increase conversations with patients with serious illness about their goals and values. We conducted a study of the program in fourteen primary care clinics participating in a high-risk care management program based in an accountable care organization. Patients in the clinics with the program implemented were more likely than those in comparison clinics to have serious illness conversations-including discussion of values and goals-documented in patients' medical records. Clinicians who participated also reported high satisfaction with training they received as part of the program, which they regarded as effective. This work suggests that the Serious Illness Care Program promotes more and better conversations among selected primary care patients, and it highlights the need for further research.

Total number of oocytes and zygotes are predictive of live birth pregnancy in fresh donor oocyte in vitro fertilization cycles.

OBJECTIVE: To evaluate the association of oocyte donor-recipient characteristics, oocyte donor response, and live birth pregnancy rate following fresh donor oocyte IVF-ET. DESIGN: Retrospective cohort study. SETTING: Academic reproductive medicine practice. PATIENT(S): Two hundred thirty-seven consecutive fresh donor oocyte IVF-ET cycles from January 1, 2007 to December 31, 2013 at the Massachusetts General Hospital Fertility Center. INTERVENTION(S): None. MAIN OUTCOME MEASURE(S): Live birth rate per cycle initiated. RESULT(S): The mean (±SD) age of oocyte donors and recipients was 27.0 ± 3.7 and 41.4 ± 4.6 years, respectively. Oocyte donor demographic/reproductive characteristics, ovarian reserve testing, and peak serum E2 during ovarian stimulation were similar among cycles which did and did not result in live birth, respectively. Overall implantation, clinical pregnancy, and live birth pregnancy rates per cycle initiated were 40.5%, 60.8%, and 54.9%, respectively. The greatest probability of live birth was observed in cycles with >10 oocytes retrieved, mature oocytes, oocytes with normal fertilization (zygote-two pronuclear stage), and cleaved embryos. CONCLUSION(S): The number of oocytes (total and mature), zygotes, and cleaved embryos are associated with live birth following donor oocyte IVF cycles. These findings suggest that specific peri-fertilization factors may be predictive of pregnancy outcomes following donor oocyte IVF cycles.

Incidental findings of nonparentage: a case for universal nondisclosure.

We advocate for the incorporation of a new clause into the consent forms for pediatric genetic testing that clearly states that any incidental information about parentage will not be revealed, regardless of the result. Using a case of misattributed maternity, we examine both the pro- and antidisclosure arguments. In the absence of arguments that clearly demonstrate irrevocable harm from nondisclosure and against a backdrop of arguments that compellingly highlight the potential for serious harms from disclosing incidental findings of nonparentage, we advocate for a universal, institution-wide policy of nondisclosure. Our proposed policy of universal nondisclosure not only provides a viable solution to the disclosure dilemma but also empowers patients to know what testing is available to them and to seek it out on their own terms, fully informed. With an easily implemented consent change, clinics can take a clear and firm stance in the disclosure debate. As a result, patients will be protected, policy will be widely understood, and cases will be resolved consistently and clearly.