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Seminars in Arthritis and Rheumatism Aug 2022Existing patient-reported outcome measures (PROMs) in rheumatoid arthritis (RA) may be limited in their applicability to populations that are at risk for inequities. We...
Validation studies of rheumatoid arthritis patient-reported outcome measures in populations at risk for inequity: A systematic review and analysis using the OMERACT summary of measurement properties equity table.
BACKGROUND
Existing patient-reported outcome measures (PROMs) in rheumatoid arthritis (RA) may be limited in their applicability to populations that are at risk for inequities. We conducted a systematic review to identify and rate evidence in the validation studies for PROMs in populations at risk for inequity.
METHODS
A systematic review of MEDLINE and EMBASE was completed. The search strategy was developed to identify measurement property studies for PROMs of interest (selected pain, disease activity, global evaluation and quality of life scales) in patients with RA. We identified experimental, observational, and qualitative studies reporting analysis of feasibility, construct validity and discriminant ability metrics for populations at risk for inequity by various factors including race, ethnicity, culture or language; employment status; sex and gender identity; education level; socioeconomic status; social support; age; health literacy and disability. These were rated based on the OMERACT Summary of Measurement Properties Equity table.
RESULTS
From 19,786 titles and abstracts screened, we identified 14 unique studies reporting validation metrics for pain (n = 3), DAS28-ESR or DAS28-CRP (n = 2), ACR20 (n = 1), patient global assessment (n = 2), EQ5D (n = 4), and PROMIS® (n = 3) by race (n = 10 studies), age (n = 6 studies), sex (n = 5 studies), education level (n = 2 studies), and disability, literacy, employment status, social support level and socioeconomic status (n = 1 study each). Five studies reported on feasibility, 12 reported construct validity metrics, and 4 studies reported on discriminant validity metrics. All studies by culture or language were rated as having good measurement property metrics. There was limited assessment of measurement property metrics for other populations at risk for inequity.
CONCLUSION
Our study highlights important gaps in patient representation in rheumatology research for accepted outcome measures. New outcome measures being developed for research purposes and clinical practice should ensure and report representation of patients from populations at risk for inequities in the testing of metrics of feasibility, construct validity and discriminant ability metrics.
Topics: Arthritis, Rheumatoid; Female; Gender Identity; Humans; Male; Pain; Patient Reported Outcome Measures; Quality of Life; Risk Factors
PubMed: 35640489
DOI: 10.1016/j.semarthrit.2022.152029 -
International Journal of Environmental... Apr 2022The objective of this systematic review is to make an inventory of the representations of the professionals of specialized institutions on the sexuality of persons with... (Review)
Review
The objective of this systematic review is to make an inventory of the representations of the professionals of specialized institutions on the sexuality of persons with intellectual disabilities. The scientific studies were identified according to the PRISMA protocol using 18 databases, with keywords on sexuality and parenthood. Studies were reviewed through a methodological assessment and then a thematic analysis. Twenty-four studies were reviewed and three themes were identified: professionals' representations of gender, sexuality, and consent; professionals' perceptions of their role in supporting people's sexual lives; and the ways in which professionals construct representations of people's sexual lives. This corpus highlights deep paradoxes in the representations of professionals concerning the socio-affective needs and sexuality of people with intellectual disabilities, creating what we could define as a "system of incompatibility" and leading to difficulties in positioning. Support is still too random and subject to control logics in the name of protecting users, who are perceived as vulnerable. Training and new ways of teamwork appear to be central to supporting the evolution of the representations and practices of professionals. Future research anchored in practices and involving users as well as professionals is necessary to better understand the paradoxical aspects of professionals' representations and to draw alternative ways of constructing these representations.
Topics: Gender Identity; Humans; Intellectual Disability; Persons with Mental Disabilities; Sexual Behavior; Sexuality
PubMed: 35457641
DOI: 10.3390/ijerph19084771 -
The Oncologist Mar 2022Gynecologic cancers standard treatment often requires the removal of some reproductive organs, making fertility preservation a complex challenge. Despite heightened...
BACKGROUND
Gynecologic cancers standard treatment often requires the removal of some reproductive organs, making fertility preservation a complex challenge. Despite heightened oncofertility awareness, knowledge about fertility attitudes and decisions of young patients with gynecologic cancer is scarce. The aim of this systematic review was to highlight what is currently known about knowledge, attitudes, and decisions about fertility, fertility preservation, and parenthood among these patients.
METHODS
Peer-reviewed journals published in English were searched in PubMed, Web of Science and EMBASE from January 1, 2000 to July 1, 2020. Childbearing, fertility, fertility preservation, pregnancy, and parenthood attitudes/decisions after gynecologic cancer from women's perspective were evaluated.
RESULTS
A total of 13 studies comprised the review. Most of the women valued fertility preservation procedures that could be regarded as a means to restore fertility. A unique feature identified was that fertility preservation was seen also as a way to restore gender identity perceived to be lost or threatened during diagnosis and treatment. Fertility counseling was suboptimal, with wide variability among studies reviewed. Comparisons between gynecologic cancers and other cancer types about fertility counseling rates were inconclusive. The potential negative impact of impaired fertility on patients' mental health and quality of life was also documented.
CONCLUSIONS
Fertility and parenthood were important matters in patients' lives, with the majority of patients expressing positive attitudes toward future childbearing. Results confirm that the inclusion of patients with gynecologic cancer in research studies focusing on this topic still remains low. Additionally, the provision of fertility counseling and referral by health professionals is still suboptimal.
Topics: Female; Fertility; Fertility Preservation; Gender Identity; Genital Neoplasms, Female; Humans; Male; Pregnancy; Quality of Life
PubMed: 35274725
DOI: 10.1093/oncolo/oyab051 -
JAMA Pediatrics May 2022Sexual orientation and gender identity change efforts (SOGICE), also called conversion therapy, is a discredited practice attempting to convert lesbian, gay, bisexual,...
IMPORTANCE
Sexual orientation and gender identity change efforts (SOGICE), also called conversion therapy, is a discredited practice attempting to convert lesbian, gay, bisexual, transgender, queer, or questioning (LGBTQ) individuals to be heterosexual and/or cisgender.
OBJECTIVES
To identify and synthesize evidence on the humanistic and economic consequences of SOGICE among LGBTQ youths in the US.
DESIGN, SETTING, AND PARTICIPANTS
This study, conducted from December 1, 2020, to February 15, 2021, included a systematic literature review and economic evaluation. The literature review analyzed published evidence on SOGICE among LGBTQ individuals of any age. The economic model evaluated the use of SOGICE vs no intervention, affirmative therapy vs no intervention, and affirmative therapy vs SOGICE to estimate the costs and adverse outcomes for each scenario and to assess the overall US economic burden of SOGICE. Published literature and public sources were used to estimate the number of LGBTQ youths exposed to SOGICE, the types of therapy received, and the associated adverse events (anxiety, severe psychological distress, depression, alcohol or substance abuse, suicide attempts, and fatalities).
EXPOSURES
SOGICE (licensed or religion-based practitioners) or affirmative therapy (licensed practitioners).
MAIN OUTCOMES AND MEASURES
Total incremental costs and quality-adjusted life-years (QALYs) vs no intervention and total economic burden of SOGICE.
RESULTS
Among 28 published studies, which included 190 695 LGBTQ individuals, 12% (range, 7%-23%) of youths experienced SOGICE, initiated at a mean age of 25 years (range, 5-58 years), with a mean (SD) duration of 26 (29) months. At least 2 types of SOGICE were administered to 43% of recipients. Relative to LGBTQ individuals who did not undergo SOGICE, recipients experienced serious psychological distress (47% vs 34%), depression (65% vs 27%), substance abuse (67% vs 50%), and attempted suicide (58% vs 39%). In the economic analysis, over a lifetime horizon with a 3% annual discount rate, the base-case model estimated additional $97 985 lifetime costs per individual, with SOGICE associated with 1.61 QALYs lost vs no intervention; affirmative therapy yielded cost savings of $40 329 with 0.93 QALYs gained vs no intervention. With an estimated 508 892 youths at risk for SOGICE in 2021, the total annual cost of SOGICE is estimated at $650.16 million (2021 US dollars), with associated harms totaling an economic burden of $9.23 billion.
CONCLUSIONS AND RELEVANCE
This economic evaluation study suggests that there is a high economic burden and high societal costs associated with SOGICE and identifies additional research questions regarding the roles of private and public funding in supporting this harmful practice.
Topics: Adolescent; Adult; Bisexuality; Female; Financial Stress; Gender Identity; Humans; Male; Sexual Behavior; Sexual and Gender Minorities; United States
PubMed: 35254391
DOI: 10.1001/jamapediatrics.2022.0042 -
LGBT Health 2022To facilitate identification of the impact of incarceration on the health of sexual and gender minority (SGM) populations, we sought to identify publicly accessible,...
Availability of Accessible Representative Health Data to Examine Sexual and Gender Minority Disparities in Incarceration and Its Health Implications in the United States, 2010-2020.
To facilitate identification of the impact of incarceration on the health of sexual and gender minority (SGM) populations, we sought to identify publicly accessible, representative health datasets that assessed SGM status and incarceration history from 2010 to 2020 and to examine SGM disparities in lifetime incarceration experiences. Datasets were identified and analyzed through a multistep process: (1) content search of 76 health datasets; (2) consultation with 14 subject matter experts; (3) a systematic review; and (4) a data analysis stage. Utilizing the identified health datasets, we produced representative estimates of sexual minority (SM) incarceration disparities. Five publicly accessible databases were identified that assessed SM status and incarceration history; none assessed gender minority status and incarceration history. Across datasets, the weighted prevalence of lifetime incarceration among SM populations was substantially higher (range = 17.5%-26.3%) than among non-SM populations (range = 4.6%-21.2%). Few publicly accessible, representative health datasets collect standardized information regarding SM status and incarceration history, and none assess diverse gender identities and incarceration history. These data suggest that a disproportionate proportion of SM individuals may experience incarceration compared with non-SM individuals. Research assessing the health effects of incarceration on SGM populations remains limited; publicly accessible, representative health data are needed to address this gap.
Topics: Gender Identity; Humans; Minority Groups; Sexual Behavior; Sexual and Gender Minorities; United States
PubMed: 35167353
DOI: 10.1089/lgbt.2021.0090 -
International Journal of Environmental... Jan 2022The health and safety of LGBTQI+ migrants or migrants who are of diverse sexual orientation, gender identity or expression (SOGIE) remains an under-studied area,... (Review)
Review
The health and safety of LGBTQI+ migrants or migrants who are of diverse sexual orientation, gender identity or expression (SOGIE) remains an under-studied area, particularly for the period during transit from their place of origin to destination. This systematic review aims to describe the literature on the health risks and consequences among SOGIE migrants during transit and examine their access and use of services. Six peer-reviewed databases and websites of nine large migration organisations were searched to identify the literature on forced migrants and sexual and gender minorities. Twenty English-language studies from 2000-2021 were included and analysed drawing on a conceptual framework. Studies emerged from six regions and the majority of research participants identified as gay men. In general, quality appraisal demonstrated studies as either medium or high quality. Findings suggested five common themes associated with SOGIE health and well-being, including: daily exposure to discrimination, harassment and violence; coping, social support and resilience; access to services; mental health; and physical and sexual health. Depression, anxiety and post-traumatic stress disorder (PTSD) were prevalent amongst SOGIE migrants, particularly when associated with detention or camp environments, and were exacerbated by social isolation. Barriers to accessing healthcare were identified and specific sexual health services were often found lacking, especially for trans persons. Unsurprisingly, during transit, SOGIE migrants are very likely to experience the double marginalisation of their migrant or minority status and their gender identity. Results indicate that services for SOGIE migrants need to tailor service access and support approaches to respond to the particular health and protection needs of SOGIE individuals in each setting.
Topics: Anxiety Disorders; Female; Gender Identity; Humans; Male; Sexual Behavior; Sexual Health; Sexual and Gender Minorities; Transients and Migrants
PubMed: 35055698
DOI: 10.3390/ijerph19020869 -
Cadernos de Saude Publica 2022Correctly recognizing gender identity in population-based surveys is essential to develop effective public health strategies to improve the living conditions of...
Correctly recognizing gender identity in population-based surveys is essential to develop effective public health strategies to improve the living conditions of transgender and gender-diverse populations, as well as to adequately collect data on cisgender individuals. This study aims to present the two-step measure as the best strategy for assessing gender identity in Brazilian surveys, thus we performed two separate analyses. Firstly, we conducted a systematic review concerning HIV-related care among Brazilian transgender and gender-diverse populations to assess the strategy used to identify participants' gender identity. Secondly, we re-analyzed data from a recent survey that included Brazilian transgender populations, comparing characteristics and health outcomes from the sample identified by single-item and by the two-step measure. Concerning the systematic review, from 6,585 references, Brazilian research teams published seven articles, and only one study used the two-step measure. Regarding this survey, the two-step measure recognized 567 cisgender and 773 transgender and gender diverse participants among the 1,340 participants who answered the questionnaire, whereas the single-item measure was able to recognize only 540 transgender and gender diverse people. Furthermore, 31 transgender women self-identified as "transgender men" on the single-item measure. Therefore, although scarcely used in Brazil, the two-step measure is a more accurate strategy to recognize gender identity.
Topics: Brazil; Female; Gender Identity; Humans; Male; Selection Bias; Surveys and Questionnaires; Transgender Persons
PubMed: 35043883
DOI: 10.1590/0102-311X00180420 -
Journal of Medical Ethics Dec 2022While fertility preservation is recommended practice for paediatric oncology patients, it is increasingly being considered for transgender children and young people in...
BACKGROUND
While fertility preservation is recommended practice for paediatric oncology patients, it is increasingly being considered for transgender children and young people in paediatric care. This raises ethical issues for clinicians, particularly around consent and shared decision-making in this new area of healthcare.
METHODS
A systematic review of normative literature was conducted across four databases in June 2020 to capture ethical considerations related to fertility counselling and preservation in paediatric transgender healthcare. The text of included publications was analysed inductively, guided by the Qualitative Analysis Guide of Leuven.
RESULTS
Twenty-four publications were identified for inclusion. Four key ethical considerations emerged from this literature: access to fertility preservation, conscientious objection, decision-making capacity of children and young people, and shared decision-making.
CONCLUSION
In the identified literature, there is consensus that transgender children and young people should not be refused access to fertility preservation services solely due to their gender identity, and that clinicians with conscientious objections to fertility preservation for this group have an obligation to refer on to willing providers. Factors that create ethical complexity in this area of paediatric care include the child's age, mental health, and parents' views.
Topics: Child; Humans; Female; Male; Adolescent; Fertility Preservation; Transgender Persons; Decision Making; Gender Identity; Delivery of Health Care
PubMed: 34980674
DOI: 10.1136/medethics-2021-107702 -
The Lancet. Public Health Dec 2021Transgender and gender non-conforming (TGNC) individuals are at a high risk of adverse mental health outcomes due to minority stress-the stress faced by individuals...
Transgender and gender non-conforming (TGNC) individuals are at a high risk of adverse mental health outcomes due to minority stress-the stress faced by individuals categorised as stigmatised social minority groups. This systematic review sought to summarise the key mental health findings of the research on TGNC individuals in mainland China. We also aimed to consolidate research on the topic, identify specific mental health disparities, and offer new perspectives for future research to inform both policy and clinical practice. An extensive search of the literature, published in English and Chinese, was done between Jan 1, 1990, and Aug 1, 2021, using PubMed, PsycINFO, Scopus, Wanfang (in Chinese), and CNKI (in Chinese). Overall, two qualitative and 28 quantitative articles were identified. The quantitative findings showed a high prevalence of mental health problems, such as depression, anxiety, substance use disorders, and stress-related issues, and greater disparities in psychological wellbeing. High prevalence is also reported in suicidality and self-harm behaviours in this group. Across the two qualitative studies, attributable factors included gender-related discrimination, barriers to accessing health services, low social support, decreased knowledge and awareness of HIV prevention, and demographic characteristics-such as marital status, educational level, and gender identity. This Review also found little evidence of gender-affirming care and mental health interventions in mainland China. Following from these results, the next step is to integrate multi-level, social-psychological interventions with education to reduce cultural stereotypes and transphobia in mainland China. Political and social implications are also discussed to inform a standard set of guidelines for transgender-inclusive health-care services, including advocating for funding to create these special care programmes and services.
Topics: Anxiety; China; Depression; Female; Gender Identity; Humans; Male; Mental Health; Self Concept; Self-Injurious Behavior; Sexual and Gender Minorities; Social Stigma; Stereotyping; Stress, Psychological; Suicidal Ideation; Transgender Persons
PubMed: 34838199
DOI: 10.1016/S2468-2667(21)00236-X -
Euro Surveillance : Bulletin Europeen... Nov 2021BackgroundIn Europe, HIV disproportionately affects men who have sex with men (MSM), people who inject drugs (PWID), prisoners, sex workers, and transgender people....
BackgroundIn Europe, HIV disproportionately affects men who have sex with men (MSM), people who inject drugs (PWID), prisoners, sex workers, and transgender people. Epidemiological data are primarily available from national HIV case surveillance systems that rarely capture information on sex work, gender identity or imprisonment. Surveillance of HIV prevalence in key populations often occurs as independent studies with no established mechanism for collating such information at the European level.AimWe assessed HIV prevalence in MSM, PWID, prisoners, sex workers, and transgender people in the 30 European Union/European Economic Area countries and the United Kingdom.MethodsWe conducted a systematic literature review of peer-reviewed studies published during 2009-19, by searching PubMed, Embase and the Cochrane Library. Data are presented in forest plots by country, as simple prevalence or pooled across multiple studies.ResultsEighty-seven country- and population-specific studies were identified from 23 countries. The highest number of studies, and the largest variation in HIV prevalence, were identified for MSM, ranging from 2.4-29.0% (19 countries) and PWID, from 0.0-59.5% (13 countries). Prevalence ranged from 0.0-15.6% in prisoners (nine countries), 1.1-8.5% in sex workers (five countries) and was 10.9% in transgender people (one country). Individuals belonging to several key population groups had higher prevalence.ConclusionThis review demonstrates that HIV prevalence is highly diverse across population groups and countries. People belonging to multiple key population groups are particularly vulnerable; however, more studies are needed, particularly for sex workers, transgender people and people with multiple risks.
Topics: Europe; Female; Gender Identity; HIV Infections; HIV Seroprevalence; Homosexuality, Male; Humans; Male; Population Groups; Prevalence; Seroepidemiologic Studies; Sex Workers; Sexual and Gender Minorities
PubMed: 34823636
DOI: 10.2807/1560-7917.ES.2021.26.47.2100044