"I would have preferred more options": accounting for non-binary youth in health research.

As a research team focused on vulnerable youth, we increasingly need to find ways to acknowledge non-binary genders in health research. Youth have become more vocal about expanding notions of gender beyond traditional categories of boy/man and girl/woman. Integrating non-binary identities into established research processes is a complex undertaking in a culture that often assumes gender is a binary variable. In this article, we present the challenges at every stage of the research process and questions we have asked ourselves to consider non-binary genders in our work. As researchers, how do we interrogate the assumptions that have made non-binary lives invisible? What challenges arise when attempting to transform research practices to incorporate non-binary genders? Why is it crucial that researchers consider these questions at each step of the research process? We draw on our own research experiences to highlight points of tensions and possibilities for change. Improving access to inclusive health-care for non-binary people, and non-binary youth in particular, is part of creating a more equitable healthcare system. We argue that increased and improved access to inclusive health-care can be supported by research that acknowledges and includes people of all genders.

GRADE Concept Paper 1: Validating the "F.A.C.E" instrument using stakeholder perceptions of feasibility, acceptability, cost, and equity in guideline implement.

BACKGROUND AND OBJECTIVE: To present a structured approach for assessing stakeholder perceptions and implementing the approach in guideline development. METHODS: This work was carried out by the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) Equity and Stakeholder Engagement Project Groups through brainstorming and iterative frameworks, stakeholder engagement, pilot testing, refinement of ideas, using input from workshops, and discussions at GRADE Working Group meetings to produce this document, which constitutes a GRADE conceptual article on implementation. RESULTS: We introduce the FACE implementation criteria, feasibility, acceptability, cost, and equity; priority; and "intent to implement" criterion. We outline the implementation importance of networks and approaches to patient and other stakeholder engagement. Implementation is often highly contextual and can benefit from stakeholder engagement and other assessments. Our FACE approach provides stakeholder questions and language to inform guideline implementation and tools. CONCLUSION: The FACE criteria propose a series of knowledge translation questions to guide the assessment of implementation for evidence-based guidelines. It is desirable for guideline developers to use a conceptual approach, such as FACE, to tailor implementation and inform end of guideline dissemination and knowledge translation activities.

Screening for thyroid dysfunction and treatment of screen-detected thyroid dysfunction in asymptomatic, community-dwelling adults: a systematic review.

BACKGROUND: This systematic review was conducted to inform the Canadian Task Force on Preventive Health Care recommendations on screening for thyroid dysfunction (TD). The review sought to answer key questions on the benefits and harms of screening for TD, patients' values and preferences for screening, and the benefits and harms of treating screen-detected TD. METHODS: This review followed Canadian Task Force on Preventive Health Care methods, which include the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach. The search strategy used for benefits and harms of screening and treatment was an update to the 2014 review by the US Preventive Services Task Force and searched MEDLINE and the Cochrane Library. MEDLINE, Embase, ProQuest Public Health, and SCOPUS were searched for patients' values and preferences for screening. Outcomes of interest included all-cause mortality, deaths due to cardiovascular diseases, fatal and non-fatal cardiovascular events, atrial fibrillation, fractures, quality of life, cognitive function, and harms due to TD treatment. Two reviewers independently screened abstracts and full texts according to pre-determined inclusion criteria and assessed the risk of bias for each study included. Strength and quality of the evidence was assessed for each outcome. A narrative synthesis was conducted due to heterogeneity of the included studies. RESULTS: No studies were found on screening for TD, treatment of subclinical hyperthyroidism, or patients' values and preferences for screening for TD. Twenty-two studies (from 24 publications) on the treatment of TD in patients with screen-detected subclinical hypothyroidism were included. Results from the included randomized controlled trials suggested no benefit of treatment for subclinical hypothyroidism for the large majority of outcomes. We found very low-quality evidence (from two cohort studies) for a small reduction in all-cause mortality among adults < 65 or 40-70 years who were treated for TD compared to those who were not. CONCLUSIONS: This review found moderate to very low-quality evidence on the benefits and harms of treatment for subclinical hypothyroidism, with most of the evidence showing no benefit of treatment.

Worsening Perceptions of Family Connectedness and Parent Support for Lesbian, Gay, and Bisexual Adolescents.

OBJECTIVES: Lesbian, gay, and bisexual (LGB) adolescents often report compromised relations with their families. Given the recent changes in societal attitudes toward LGB individuals, in respect to rights for marriage and other legal statuses, we explore whether or not there has been a change in how LGB and heterosexual adolescents perceive their family relations over time. METHODS: Using the British Columbia Adolescent Health Survey from British Columbia, Canada (N = 99,373; M age = 14.8), we investigated the trends and disparities in family connectedness and mother/father support in four data sets from 1998 to 2013. RESULTS: We found that while levels of perceived family connectedness and parent support have increased for heterosexual adolescents since 1998, the same increases were not found for LGB adolescents. Among LGB participants, levels of perceived connectedness/support generally decreased in each survey waves, especially among females. Alarmingly, significant disparities in these perceptions remained for LGB youth over time. CONCLUSIONS: Our findings have implications for supportive interventions focused on LGB adolescents and their families and in particular, the role of father support.

Are we leveling the playing field? Trends and disparities in sports participation among sexual minority youth in Canada.

PURPOSE: Sports participation and physical fitness are widely beneficial for young people, yet activity levels among young people are declining. Despite growing popular media attention on the participation of sexual minority (e.g., lesbian, gay, and bisexual) youth in sports and various campaigns to improve the often homophobic climate of sports, there is limited evidence that sexual minority youth participate in sports. Our aim was to provide a current portrait of sports participation among 3 groups of sexual minority youth (e.g., lesbian, gay, and bisexual) in British Columbia, Canada, as well as to document population trends. METHODS: Pooled population-level data from British Columbia, Canada (n = 99,373) were used to examine trends and disparities in sports participation among sexual minority and heterosexual youth. Age-adjusted logistic regression models were used to examine changes in participation over time and disparities in participation over time (1998-2013). RESULTS: We found an overall decline in sports participation and physical activity (PA) for all youth. Sexual minority students were less likely to participate in formal sports (with a coach) and informal sports (without a coach) compared with their heterosexual peers. The disparity in participating in informal sports between heterosexual and sexual minority youth has narrowed over time for some sexual orientation groups, whereas the disparity in participating in formal sports has widened over time in some cases. CONCLUSION: This study provides a comprehensive examination of sports participation among sexual minority youth over the past 15 years. Despite changing societal attitudes and laudable efforts to reduce homophobia in sports, results suggest that there are continued barriers to participation for sexual minority youth. Further research is needed to understand the factors that limit sports participation for these youth and to inform program development. PA is critical to lifelong health and well-being, and thus continued efforts are needed to increase the sports participation of sexual minority youth in particular.

Why Girls Choose Not to Use Barriers to Prevent Sexually Transmitted Infection During Female-to-Female Sex.

PURPOSE: Using data from a national qualitative study of lesbian, bisexual, and other sexual minority adolescent girls in the U.S., this study examined their awareness of the risk of sexually transmitted infection (STI) and opportunities for barrier use. METHODS: Online asynchronous focus groups were conducted with lesbian and bisexual (LB) girls ages 14-18 years. Girls were assigned to online groups based on their self-identified sexual identity and whether they were sexually experienced or not. Two moderators posed questions and facilitated online discussions. Interpretive description analysis conducted by multiple members of the research team was used to categorize the results. RESULTS: Key factors in girls' decisions not to use barriers with female partners concerned pleasure, sex of sexual partner, lack of knowledge of sexual risk or of barrier use for female-to-female sexual activities, and use of STI testing as a prevention tool. CONCLUSIONS: Addressing knowledge and access gaps is an important first step for improving sexual health. Prevention priorities should focus on helping LB girls understand their risk of STI transmission in both opposite and same-sex relationships. Tailoring messaging to move beyond heteronormative scripts is critical to engaging LB girls and equipping them with the skills and knowledge to have safer sex regardless of the sex of their partner.

Trend Disparities in Emotional Distress and Suicidality Among Sexual Minority and Heterosexual Minnesota Adolescents From 1998 to 2010.

BACKGROUND: Sexual minority young people have demonstrated higher rates of emotional distress and suicidality in comparison to heterosexual peers. Research to date has not examined trends in these disparities, specifically, whether there have been disparity reductions or increases and how outcomes have differed over time by sex and sexual orientation group. METHODS: Minnesota Student Survey data, collected from 9th and 12th graders in 3 cohorts (1998, 2004, 2010) were used to examine emotional distress and suicidality rates. Logistic regression analyses were completed to examine outcome changes over time within and across sexual orientation/sex groups. RESULTS: With few exceptions, sexual minority youth are at increased risk of endorsing emotional distress and suicidality indicators in each surveyed year between 1998 and 2010. Young people with both-sex partners reported more emotional distress across all health indicators compared to their opposite-sex partnered peers. With a few exceptions, gaps in disparities between heterosexual and sexual minority have not changed from 2004 to 2010. CONCLUSIONS: Disparities in emotional health persist among youth. Research is needed to advance understanding of mental health disparities, with consideration of sexual orientation differences and contextualized to sociocultural status and changes over time. Personalized prevention strategies are needed to promote adolescent mental health.

Screening for chlamydia and/or gonorrhea in primary health care: protocol for systematic review.

BACKGROUND: Chlamydia trachomatis and Neisseria gonorrhoeae are the most commonly reported sexually transmitted infections in Canada. Existing national guidance on screening for these infections was not based on a systematic review, and recommendations as well as implementation considerations (e.g., population groups, testing and case management) should be explicit and reflect the quality of evidence. The aim of this systematic review is to synthesize research on screening for these infections in sexually active individuals within primary care. We will also review evidence on how people weigh the relative importance of the potential outcomes from screening, rated as most important by the Canadian Task Force on Preventive Health Care (CTFPHC) with input from patients and stakeholders. METHODS: We have developed a peer-reviewed strategy to comprehensively search MEDLINE, Embase, Cochrane Library, CINAHL, and PsycINFO for English and French literature published 1996 onwards. We will also search trial registries and conference proceedings, and mine references lists. Screening, study selection, risk of bias assessments, and quality of findings across studies (for each outcome) will be independently undertaken by two reviewers with consensus for final decisions. Data extraction will be conducted by one reviewer and checked by another for accuracy and completeness. The CTFPHC and content experts will provide input for decisions on study design (i.e., when and whether to include uncontrolled studies for screening effectiveness) and for interpretation of the findings. DISCUSSION: The results section of the review will include a description of all studies, results of all analyses, including planned subgroup and sensitivity analyses, and evidence profiles and summary of findings tables incorporating assessment based on Grading of Recommendations Assessment, Development and Evaluation (GRADE) methods to communicate our confidence in the estimates of effect. We will compare our findings to others and discuss limitations of the review and available literature. The findings will be used by the CTFPHC-supplemented by consultations with patients and stakeholders and from other sources on issues of feasibility, acceptability, costs/resources, and equity-to inform recommendations on screening to support primary health care providers in delivering preventive care. SYSTEMATIC REVIEW REGISTRATION: International Prospective Register of Systematic Reviews (PROSPERO), registration number CRD42018100733.

Far from home? A pilot study tracking women's journeys to a Canadian abortion clinic.

OBJECTIVE: Abortion has been recognized internationally as an essential health service. The geographical distance to an abortion provider is acknowledged as a major barrier to access. This pilot study tracks women's journeys to the Toronto Morgentaler Clinic for abortion services. METHODS: A questionnaire was developed specifically for this study and was administered over a four-month period to women using abortion services at the clinic. Questions asked for demographic information and details of the costs, distances, and women's experiences of their journeys to the clinic. RESULTS: A total of 1022 of 1256 surveys were completed for an overall response rate of 81%. The majority of women in the sample (54%) were 21 to 30 years old, had a partner (55.8%), were employed full time (50.5%), and had an income of less than $30 000 per year (68.2%). Most women had travelled an hour or more to the clinic (73.5%), and the remainder had travelled for less than half an hour. Women reporting incomes of less than 30,000 dollars were more likely than wealthier women to have travelled from 200 km to more than 1000 km (OR 1.74; 95% CI 1.16-2.71). Women who were under the age of 30 were more likely to rate their journey as difficult or very difficult (OR 1.68; 95% CI 0.98-2.88). CONCLUSION: More research is needed to determine how far women must travel for abortion services in Canada and to determine the wider health, political, and legal implications of these journeys.

Creating and testing the concept of an academic NGO for enhancing health equity: a new mode of knowledge production?

CONTEXT: Collaborative action is required to address persistent and systematic health inequities which exist for most diseases in most countries of the world. OBJECTIVES: The Academic NGO initiative (ACANGO) described in this paper was set up as a focused network giving priority to twinned partnerships between Academic research centres and community-based NGOs. ACANGO aims to capture the strengths of both in order to build consensus among stakeholders, engage the community, focus on leadership training, shared management and resource development and deployment. METHODS: A conceptual model was developed through a series of community consultations. This model was tested with four academic-community challenge projects based in Kenya, Canada, Thailand and Rwanda and an online forum and coordinating hub based at the University of Ottawa. FINDINGS: Between February 2005 and February 2007, each of the four challenge projects was able to show specific outputs, outcomes and impacts related to enhancing health equity through the relevant production and application of knowledge. CONCLUSIONS: The ACANGO initiative model and network has demonstrated success in enhancing the production and use of knowledge in program design and implementation for vulnerable populations.

Investigating the decision-making needs of HIV-positive women in Africa using the Ottawa Decision-Support Framework: Knowledge gaps and opportunities for intervention.

OBJECTIVE: To examine HIV-positive women's decision making in the context of pregnancy and HIV/AIDS and to explore interventions that may enhance and develop women's decision-making capacity in the sub-Saharan African context. METHODS: The Ottawa Decision-Support Framework was used to assemble evidence of women's decision-making needs. Several electronic databases were searched and an Internet search of the World Wide Web was conducted to search grey literature sources. An evidence-based approach to assessing benefits, harms and current practices was employed. RESULTS: Several gaps in our knowledge about women's decision making in the context of pregnancy and HIV were identified. The availability of evidence varied for each decision; however, significant gaps included: evidence around testing for ones status, advanced directives for self and child, disclosure (specifically, the impact of), others perceptions of antiretroviral use and data on termination of pregnancies. CONCLUSION: Decision making as a concept was generally not addressed in the MTCT literature. Evidence regarding the perceptions of women and others regarding the various decisions was often not available and subsequently an important aspect of MTCT interventions neglected. PRACTICE IMPLICATIONS: Incorporating a multi-disciplinary decision-support framework may prove useful to promote women's autonomy and involvement in MTCT-related decision making.

The challenges of including sex/gender analysis in systematic reviews: a qualitative survey.

BACKGROUND: Systematic review methodology includes the rigorous collection, selection, and evaluation of data in order to synthesize the best available evidence for health practice, health technology assessments, and health policy. Despite evidence that sex and gender matter to health outcomes, data and analysis related to sex and gender are frequently absent in systematic reviews, raising concerns about the quality and applicability of reviews. Few studies have focused on challenges to implementing sex/gender analysis within systematic reviews. METHODS: A multidisciplinary group of systematic reviewers, methodologists, biomedical and social science researchers, health practitioners, and other health sector professionals completed an open-ended survey prior to a two-day workshop focused on sex/gender, equity, and bias in systematic reviews. Respondents were asked to identify challenging or 'thorny' issues associated with integrating sex and gender in systematic reviews and indicate how they address these in their work. Data were analysed using interpretive description. A summary of the findings was presented and discussed with workshop participants. RESULTS: Respondents identified conceptual challenges, such as defining sex and gender, methodological challenges in measuring and analysing sex and gender, challenges related to availability of data and data quality, and practical and policy challenges. No respondents discussed how they addressed these challenges, but all proposed ways to address sex/gender analysis in the future. CONCLUSIONS: Respondents identified a wide range of interrelated challenges to implementing sex/gender considerations within systematic reviews. To our knowledge, this paper is the first to identify these challenges from the perspectives of those conducting and using systematic reviews. A framework and methods to integrate sex/gender analysis in systematic reviews are in the early stages of development. A number of priority items and collaborative initiatives to guide systematic reviewers in sex/gender analysis are provided, based on the survey results and subsequent workshop discussions. An emerging 'community of practice' is committed to enhancing the quality and applicability of systematic reviews by integrating considerations of sex/gender into the review process, with the goals of improving health outcomes and ensuring health equity for all persons.

Development and evaluation of 'briefing notes' as a novel knowledge translation tool to aid the implementation of sex/gender analysis in systematic reviews: a pilot study.

BACKGROUND: There is increasing recognition of sex/gender differences in health and the importance of identifying differential effects of interventions for men and women. Yet, to whom the research evidence does or does not apply, with regard to sex/gender, is often insufficiently answered. This is also true for systematic reviews which synthesize results of primary studies. A lack of analysis and reporting of evidence on sex/gender raises concerns about the applicability of systematic reviews. To bridge this gap, this pilot study aimed to translate knowledge about sex/gender analysis (SGA) into a user-friendly 'briefing note' format and evaluate its potential in aiding the implementation of SGA in systematic reviews. METHODS: Our Sex/Gender Methods Group used an interactive process to translate knowledge about sex/gender into briefing notes, a concise communication tool used by policy and decision makers. The briefing notes were developed in collaboration with three Cochrane Collaboration review groups (HIV/AIDS, Hypertension, and Musculoskeletal) who were also the target knowledge users of the briefing notes. Briefing note development was informed by existing systematic review checklists, literature on sex/gender, in-person and virtual meetings, and consultation with topic experts. Finally, we held a workshop for potential users to evaluate the notes. RESULTS: Each briefing note provides tailored guidance on considering sex/gender to reviewers who are planning or conducting systematic reviews and includes the rationale for considering sex/gender, with examples specific to each review group's focus. Review authors found that the briefing notes provided welcome guidance on implementing SGA that was clear and concise, but also identified conceptual and implementation challenges. CONCLUSIONS: Sex/gender briefing notes are a promising knowledge translation tool. By encouraging sex/gender analysis and equity considerations in systematic reviews, the briefing notes can assist systematic reviewers in ensuring the applicability of research evidence, with the goal of improved health outcomes for diverse populations.

Appraising the evidence: applying sex- and gender-based analysis (SGBA) to Cochrane systematic reviews on cardiovascular diseases.

OBJECTIVE: To examine the use of sex- and gender-based analysis (SGBA) in systematic reviews of cardiovascular health in order to strengthen the evidence base for clinical practice and policy. METHODS: To determine the current status of SGBA in systematic reviews, an appraisal tool was developed by the research team and applied by an independent reviewer to a random sample of 38 Cochrane systematic reviews. The sample was drawn from reviews addressing interventions for cardiovascular diseases (CVD). A random sample of Cochrane reviews in cardiovascular health was selected from the Cochrane Library, Issue 3, 2001, to Issue 3, 2007. The main outcome measure was the number of reviews that included analysis of sex or gender or both. RESULTS: Our findings showed that SGBA was generally absent in the sampled reviews. Data were rarely disaggregated by sex; only 2 of 38 reviews reported any sex or gender research gaps. Only one quarter of the reviews included a rationale as to why any subgroup analyses by sex were or were not completed. None of the 38 reviews met all of the appraisal tool criteria. As well, we found that where sex or gender was mentioned, the terms were used interchangeably. CONCLUSIONS: Despite increasing evidence over the past decade documenting that sex and gender frequently matter in CVD, this study demonstrated that SGBA was rarely considered in systematic reviews. We suggest this omission has important implications for assuring the quality of research and of evidence-based policy and practice and for achieving equitable health outcomes for women and men. To build a robust evidence base for future work in cardiovascular health, we propose that the methodologies of systematic reviews and of SGBA be refined and synchronized to enhance the collection, synthesis, and analysis of evidence for decision making.