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INTRODUCTION: Cancer risk factors are more common among sexual minority populations (e.g., lesbian, bisexual) than their heterosexual peers, yet little is known about cancer incidence across sexual orientation groups. METHODS: The 1989-2017 data from the Nurses' Health Study II, a longitudinal cohort of female nurses across the United States, were analyzed (N = 101,543). Sexual orientation-related cancer disparities were quantified by comparing any cancer incidence among four sexual minority groups based on self-disclosure-(1) heterosexual with past same-sex attractions/partners/identity; (2) mostly heterosexual; (3) bisexual; and (4) lesbian women-to completely heterosexual women using age-adjusted incidence rate ratios (aIRR) calculated by the Mantel-Haenszel method. Additionally, subanalyses at 21 cancer disease sites (e.g., breast, colon/rectum) were conducted. RESULTS: For all-cancer analyses, there were no statistically significant differences in cancer incidence at the 5% type I error cutoff among sexual minority groups when compared to completely heterosexual women; the aIRR was 1.17 (95% CI,0.99-1.38) among lesbian women and 0.80 (0.58-1.10) among bisexual women. For the site-specific analyses, incidences at multiple sites were significantly higher among lesbian women compared to completely heterosexual women: thyroid cancer (aIRR, 1.87 [1.03-3.41]), basal cell carcinoma (aIRR, 1.85 [1.09-3.14]), and non-Hodgkin lymphoma (aIRR, 2.13 [1.10-4.12]). CONCLUSION: Lesbian women may be disproportionately burdened by cancer relative to their heterosexual peers. Sexual minority populations must be explicitly included in cancer prevention efforts. Comprehensive and standardized sexual orientation data must be systematically collected so nuanced sexual orientation-related cancer disparities can be accurately assessed for both common and rare cancers.
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STUDY QUESTION: Does medically assisted reproduction (MAR) use among cisgender women differ among those with same-sex partners or lesbian/bisexual identities compared to peers with different-sex partners or heterosexual identities? SUMMARY ANSWER: Women with same-sex partners or lesbian/bisexual identities are more likely to utilize any MAR but are no more likely to use ART (i.e. IVF, reciprocal IVF, embryo transfer, unspecified ART, ICSI, and gamete or zygote intrafallopian transfer) compared to non-ART MAR (i.e. IUI, ovulation induction, and intravaginal or intracervical insemination) than their different-sex partnered and completely heterosexual peers. WHAT IS KNOWN ALREADY: Sexual minority women (SMW) form families in myriad ways, including through fostering, adoption, genetic, and/or biological routes. Emerging evidence suggests this population increasingly wants to form genetic and/or biological families, yet little is known about their family formation processes and conception needs. STUDY DESIGN, SIZE, DURATION: The Growing Up Today Study is a US-based prospective cohort (n = 27 805). Participants were 9-17 years of age at enrollment (1996 and 2004). Biennial follow-up is ongoing, with data collected through 2021. PARTICIPANTS/MATERIALS, SETTING, METHODS: Cisgender women who met the following criteria were included in this sample: endorsed ever being pregnant; attempted a pregnancy in 2019 or 2021; and endorsed either a male- or female-sex partner OR responded to questions regarding their sexual identity during their conception window. The main outcome was any MAR use including ART (i.e. procedures involving micromanipulation of gametes) and non-ART MAR (i.e. nonmanipulation of gametes). Secondary outcomes included specific MAR procedures, time to conception, and trends across time. We assessed differences in any MAR use using weighted modified Poisson generalized estimating equations. MAIN RESULTS AND THE ROLE OF CHANCE: Among 3519 participants, there were 6935 pregnancies/pregnancy attempts and 19.4% involved MAR. A total of 47 pregnancies or pregnancy attempts were among the same-sex partnered participants, while 91 were among bisexual participants and 37 among lesbian participants. Participants with same-sex, compared to different-sex partners were almost five times as likely to use MAR (risk ratio [95% CI]: 4.78 [4.06, 5.61]). Compared to completely heterosexual participants, there was greater MAR use among lesbian (4.00 [3.10, 5.16]) and bisexual (2.22 [1.60, 3.07]) participants compared to no MAR use; mostly heterosexual participants were also more likely to use ART (1.42 [1.11, 1.82]) compared to non-ART MAR. Among first pregnancies conceived using MAR, conception pathways differed by partnership and sexual identity groups; differences were largest for IUI, intravaginal insemination, and timed intercourse with ovulation induction. From 2002 to 2021, MAR use increased proportionally to total pregnancies/pregnancy attempts; ART use was increasingly common in later years among same-sex partnered and lesbian participants. LIMITATIONS, REASONS FOR CAUTION: Our results are limited by the small number of SMW, the homogenous sample of mostly White, educated participants, the potential misclassification of MAR use when creating conception pathways unique to SMW, and the questionnaire's skip logic, which excluded certain participants from receiving MAR questions. WIDER IMPLICATIONS OF THE FINDINGS: Previous studies on SMW family formation have primarily focused on clinical outcomes from ART procedures and perinatal outcomes by conception method, and have been almost exclusively limited to European, clinical samples that relied on partnership data only. Despite the small sample of SMW within a nonrepresentative study, this is the first study to our knowledge to use a nonclinical sample of cisgender women from across the USA to elucidate family formation pathways by partnership as well as sexual identity, including pathways that may be unique to SMW. This was made possible by our innovative approach to MAR categorization within a large, prospective dataset that collected detailed sexual orientation data. Specifically, lesbian, bisexual, and same-sex partnered participants used both ART and non-ART MAR at similar frequencies compared to heterosexual and different-sex partnered participants. This may signal differential access to conception pathways owing to structural barriers, emerging conception trends as family formation among SMW has increased, and a need for conception support beyond specialized providers and fertility clinics. STUDY FUNDING/COMPETING INTEREST(S): The research reported in this publication was supported by the National Institute on Minority Health and Health Disparities of the National Institutes of Health (NIH), under award number R01MD015256. Additionally, KRSS is supported by NCI grant T32CA009001, AKH by the NCI T32CA057711, PC by the NHLBI T32HL098048, BM by the Stanford Maternal Child Health Research Institute Clinical Trainee Support Grant and the Diversity Fellowship from the American Society for Reproductive Medicine Research Institute, BGE by NICHD R01HD091405, and SM by the Thomas O. Pyle Fellowship through the Harvard Pilgrim Health Care Foundation and Harvard University, NHLBI T32HL098048, NIMH R01MH112384, and the William T. Grant Foundation grant number 187958. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The first author recently had a leadership role in the not-for-profit program, The Lesbian Health Fund, a research fund focused on improving the health and wellbeing of LGBTQ+ women and girls. The fund did not have any role in this study and the author's relationship with the fund did not bias the findings of this manuscript. TRIAL REGISTRATION NUMBER: N/A.
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Técnicas de Reprodução Assistida , Parceiros Sexuais , Minorias Sexuais e de Gênero , Humanos , Feminino , Estudos Prospectivos , Minorias Sexuais e de Gênero/estatística & dados numéricos , Minorias Sexuais e de Gênero/psicologia , Adulto , Parceiros Sexuais/psicologia , Gravidez , Masculino , Heterossexualidade/estatística & dados numéricos , Heterossexualidade/psicologiaRESUMO
BACKGROUND: Developments in natural language processing (NLP) and unsupervised machine learning methodologies (e.g., clustering) have given researchers new tools to analyze both structured and unstructured health data. We applied these methods to 2019 Ohio disease intervention specialist (DIS) syphilis records, to determine whether these methods can uncover novel patterns of co-occurrence of individual characteristics, risk factors, and clinical characteristics of syphilis that are not yet reported in the literature. METHODS: The 2019 DIS syphilis records (n=1,996) contain both structured data (categorical and numerical variables) and unstructured notes. In the structured data, we examined case demographics, syphilis risk factors, and clinical characteristics of syphilis. For the unstructured text, we applied TF-IDF (term frequency multiplied by inverse document frequency) weights, a common way to convert text into numerical representations. We performed agglomerative clustering with cosine similarity using the CLUTO software. RESULTS: The cluster analysis yielded six clusters of syphilis cases based on patterns in the structured and unstructured data. The average internal similarities were much higher than the average external similarities, indicating that the clusters were well-formed. The factors underlying three of the clusters related to patterns of missing data. The factors underlying the other three clusters were sexual behaviors and partnerships. Notably, one of the three consisted of individuals who reported oral sex with male or anonymous partners while intoxicated, and one was comprised mainly of males who have sex with females. CONCLUSIONS: Our analysis resulted in clusters that were well-formed mathematically, but did not reveal novel epidemiological information about syphilis risk factors or transmission that were not already known.
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BACKGROUND: Sexual minority (SM) individuals (e.g., those with same-sex attractions/partners or who identify as lesbian/gay/bisexual) experience a host of physical and mental health disparities. However, little is known about sexual orientation-related disparities in gestational diabetes mellitus (GDM) and hypertensive disorders of pregnancy (HDP; gestational hypertension [gHTN] and preeclampsia). OBJECTIVE: To estimate disparities in GDM, gHTN and preeclampsia by sexual orientation. METHODS: We used data from the Nurses' Health Study II-a cohort of nurses across the US enrolled in 1989 at 25-42 years of age-restricted to those with pregnancies ≥20 weeks gestation and non-missing sexual orientation data (63,518 participants; 146,079 pregnancies). Our primary outcomes were GDM, gHTN and preeclampsia, which participants reported for each of their pregnancies. Participants also reported their sexual orientation identity and same-sex attractions/partners. We compared the risk of each outcome in pregnancies among heterosexual participants with no same-sex experience (reference) to those among SM participants overall and within subgroups: (1) heterosexual with same-sex experience, (2) mostly heterosexual, (3) bisexual and (4) lesbian/gay participants. We used modified Poisson models to estimate risk ratios (RR) and 95% confidence intervals (CI), fit via weighted generalised estimating equations, to account for multiple pregnancies per person over time and informative cluster sizes. RESULTS: The overall prevalence of each outcome was ≤5%. Mostly heterosexual participants had a 31% higher risk of gHTN (RR 1.31, 95% CI 1.03, 1.66), and heterosexual participants with same-sex experience had a 31% higher risk of GDM (RR 1.31, 95% CI 1.13, 1.50), compared to heterosexual participants with no same-sex experience. The magnitudes of the risk ratios were high among bisexual participants for gHTN and preeclampsia and among lesbian/gay participants for gHTN. CONCLUSIONS: Some SM groups may be disparately burdened by GDM and HDP. Elucidating modifiable mechanisms (e.g., structural barriers, discrimination) for reducing adverse pregnancy outcomes among SM populations is critical.
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Diabetes Gestacional , Hipertensão Induzida pela Gravidez , Minorias Sexuais e de Gênero , Humanos , Feminino , Gravidez , Diabetes Gestacional/epidemiologia , Adulto , Hipertensão Induzida pela Gravidez/epidemiologia , Minorias Sexuais e de Gênero/estatística & dados numéricos , Estados Unidos/epidemiologia , Comportamento Sexual/estatística & dados numéricos , Pré-Eclâmpsia/epidemiologia , Disparidades nos Níveis de Saúde , Fatores de RiscoRESUMO
This study investigates the toxic effect of harmful materials, unfiltered by the placenta, on neonatal umbilical cord (UC) vessels, focusing on stress-induced adaptations in transcriptional and translational processes. It aims to analyze changes in pathways related to mRNA condensate formation, transcriptional regulation, and DNA damage response under maternal smoking-induced stress. UC vessels from neonates born to smoking (Sm) and nonsmoking mothers (Ctr) were examined. Immunofluorescence staining and confocal microscopy assessed the localization of key markers, including Transcription Complex Subunit 1 (CNOT1) and the largest subunit of RNA polymerase II enzyme (RPB1). Additionally, markers of DNA damage response, such as Poly(ADP-ribose) polymerase-1, were evaluated. In Sm samples, dissolution of CNOT1 granules in UC vessels was observed, potentially aiding stalled translation and enhancing transcription via RPB1 assembly and translocation. Control vessels showed predominant cytoplasmic RPB1 localization. Despite adaptive responses, Sm endothelial cells exhibited significant damage, indicated by markers like Poly(ADP-ribose) polymerase-1. Ex vivo metal treatment on control vessels mirrored Sm sample alterations, emphasizing marker roles in cell survival under toxic exposure. Maternal smoking induces specific molecular adaptations in UC vessels, affecting mRNA condensate formation, transcriptional regulation, and DNA damage response pathways. Understanding these intricate molecular mechanisms could inform interventions to improve neonatal health outcomes and mitigate adverse effects of toxic exposure during pregnancy.
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Distrofias de Cones e Bastonetes , Células Endoteliais , Recém-Nascido , Humanos , Feminino , Gravidez , Regulação da Expressão Gênica , Transcrição Gênica , Poli(ADP-Ribose) Polimerases , RNA Mensageiro/genética , Fatores de TranscriçãoRESUMO
Objectives. To analyze abortion incidence in Indiana concurrent with changes in abortion-related laws. Methods. Using publicly available data, we created a timeline of abortion-related laws in Indiana, calculated abortion rates by geography, and described changes in abortion occurrence coincident with changes in abortion-related laws between 2010 and 2019. Results. Between 2010 and 2019, Indiana's legislature passed 14 abortion-restricting laws, and 4 of 10 abortion-providing clinics closed. The Indiana abortion rate decreased from 7.8 abortions per 1000 women aged 15 to 44 years in 2010 to 5.9 in 2019. At all time points, the abortion rate was 58% to 71% of the Midwestern rate and 48% to 55% of the national rate. By 2019, nearly 1 in 3 (29%) Indiana residents who obtained abortion care did so outside the state. Conclusions. Access to abortion in Indiana over the past decade was low, required increases in interstate travel to obtain care, and co-occurred with the passage of numerous abortion restrictions. Public Health Implications. These findings preview unequal abortion access and increases in interstate travel as state-level restrictions and bans go into effect across the country. (Am J Public Health. 2023;113(4):429-437. https://doi.org/10.2105/AJPH.2022.307196).
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Aborto Induzido , Gravidez , Feminino , Humanos , Estados Unidos/epidemiologia , Indiana/epidemiologia , Incidência , Órgãos Governamentais , Viagem , Aborto LegalRESUMO
ABSTRACT: The American Sexually Transmitted Diseases Association has, for several years, been conducting a cross-sector workshop to bring together a variety of stakeholders to develop ideas for collaboratively improving the sexually transmitted infection control efforts in the United States. In this summary, we share the content of discussions and ideas of the fourth annual workshop for future research and potential changes to practice with a focus on diagnostic capacity.
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Infecções Sexualmente Transmissíveis , Humanos , Infecções Sexualmente Transmissíveis/diagnóstico , Infecções Sexualmente Transmissíveis/epidemiologia , Infecções Sexualmente Transmissíveis/prevenção & controle , Estados Unidos/epidemiologiaRESUMO
BACKGROUND: The relationship between housing instability and reproductive healthcare is understudied. We examined the association between housing insecurity and access and utilization of general healthcare, contraceptive healthcare, and abortion care. METHODS: Using data from a population-representative survey of adult reproductive-age Ohio women (N = 2,529), we assessed housing insecurity (not paying rent/mortgage on time in the past year). We examined associations between housing insecurity and the following outcomes: (1) not being able to access general healthcare in the past year; (2) experiencing delays or difficulties in accessing contraceptive healthcare in the past year; and (3) ever having an abortion. We used unadjusted and adjusted logistic regression models. We selected confounders a priori and included age, socioeconomic status, and healthcare status. RESULTS: Overall, 10.6% of Ohio women of adult reproductive age experienced housing insecurity. Approximately 27.5% of respondents were not able to access general healthcare and 10.4% experienced delays or difficulties in accessing contraceptive care. Compared to housing-secure respondents, housing-insecure women were less able to access general healthcare (adjusted odds ratio [aOR]:2.16; 95% confidence interval [CI]:1.45-3.23) and more likely to experience delays or difficulties when accessing contraceptive care (aOR:1.74; 95% CI:1.00-3.04). Insecure housing was not statistically associated with ever having an abortion (aOR:1.76; 95% CI:0.93-3.34). CONCLUSIONS: In this study, recent housing insecurity was associated with poorer access to general and contraceptive healthcare. Studies utilizing multidimensional measures of housing insecurity and other material insecurity measures are needed to further explore the relationship between material insecurity and access to general and contraceptive care.
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Abastecimento de Alimentos , Habitação , Adulto , Feminino , Humanos , Ohio , Acessibilidade aos Serviços de Saúde , AnticoncepcionaisRESUMO
The relationship between smoking and human health has been investigated mostly in adults, despite the fact that the chemicals originating from sustained maternal smoking disrupt the carefully orchestrated regulatory cascades in the developing fetus. In this study, we followed molecular alterations in the umbilical cord (UC) vessels and fetal red blood cells (RBCs), which faithfully reflect the in vivo status of the fetus. We showed evidence for the decreased level of DNA-PKcs-positive nuclei in samples with smoking origin, which is associated with the impaired DNA repair system. Furthermore, we pointed out the altered ratio of MMP-9 metalloproteinase and its endogenous inhibitor TIMP-1, which might be a possible explanation for the morphological abnormalities in the UC vessels. The presented in vivo dataset emphasizes the higher vulnerability of the veins, as the primary target for the toxic materials unfiltered by the placenta. All these events become amplified by the functionally impaired fetal RBC population via a crosstalk mechanism between the vessel endothelium and the circulating RBCs. In our ex vivo approach, we looked for the molecular explanation of metal-exposure-induced alterations, where expressions of the selected genes were upregulated in the control group, while samples with smoking origin showed a lack of response, indicative of prior long-term in utero exposure.
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Placenta , Cordão Umbilical , Gravidez , Adulto , Feminino , Humanos , Feto , Fumar/efeitos adversos , Eritrócitos/química , Sangue Fetal/metabolismoRESUMO
BACKGROUND: Legislative and judicial procedures related to banning abortion after 6 weeks of gestation in Ohio occurred from November 2018 to July 2019. These activities could have increased the belief that abortion has become illegal even though the 6-week abortion ban has never been in effect to date. OBJECTIVE: We sought to determine the prevalence and correlates of holding the belief that abortion is illegal in Ohio and to evaluate whether this belief increased over the time in which the 6-week abortion ban was introduced, passed twice, and then blocked in Ohio. STUDY DESIGN: We analyzed data from the first wave of the Ohio Survey of Women, a population-based survey of adult, reproductive-aged Ohioan women conducted from October 2018 to June 2019. During each of the 8 survey months, a median of 240 women (range, 70-761) completed the survey, including the survey question "Based on what you know or have heard, is it legal to get an abortion in your state?" We used multivariable logistic regression to assess the prevalence and correlates of believing that abortion is illegal in the state of Ohio. In addition, we used multinomial logistic regression to evaluate whether this belief increased over the interval during which women completed the survey, which roughly corresponded to the interval marked by legislative and judicial activities surrounding the 6-week abortion ban. RESULTS: Most of the 2359 participants understood that abortion is legal in the state of Ohio (64.0%) with the remainder believing it to be illegal (9.8%) or being unsure (26.2%). Correlates of believing abortion to be illegal included younger age, lower socioeconomic status, never married or married status, and Black, non-Hispanic race and ethnicity. Being unsure about legality did not change over time; however, the proportion of women who believed that abortion is illegal increased from the first month (4.5%) to the last month (15.9%) of the study period. Each additional study month was associated with a 17% increase in the odds of believing abortion to be illegal, in both unadjusted and adjusted models (odds ratio, 1.17; 95% confidence interval, 1.08-1.27). CONCLUSION: Attempts to restrict abortion access could contribute to women mistakenly believing that abortion is illegal despite it being unsuccessful.
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Aborto Induzido/legislação & jurisprudência , Aborto Legal/legislação & jurisprudência , Conhecimentos, Atitudes e Prática em Saúde , Adolescente , Adulto , Feminino , Idade Gestacional , Humanos , Ohio , Gravidez , Classe Social , Inquéritos e Questionários , Adulto JovemRESUMO
PURPOSE: We sought to address the construct validity and reliability of the Personal Impact of Epilepsy Scale (PIES), an epilepsy-specific quality-of-life measure, in patients with epilepsy in Uganda. We also sought to assess the applicability of the scale across three languages: English, Luganda, and Runyankole. METHODS: Patients with epilepsy (Nâ¯=â¯626) were recruited at the time of care seeking from Mulago National Referral Hospital (MNRH), Butabika National Referral Mental Hospital (BNRMH), and Mbarara Regional Referral Hospital (MRRH), and were given the English, Runyankole, and Luganda versions of the PIES as a part of a larger interview. Reliability, internal consistency specifically, was assessed using three parameters: Cronbach's alpha, McDonald's Omega, and composite reliability. Construct validity (internal structure) was evaluated with principal component analysis (PCA) for three factors, as well as confirmatory factor analysis (CFA) for a three-factor structure of the scale. We also assessed correlations between the three PIES subscales and the seizure severity question in the Liverpool Seizure Severity Scale (LSSS) and reported seizure frequency. RESULTS: The three-factor model of the PIES had adequate reliability, with Cronbach's Alpha, McDonald's Omega, and composite reliability values over 0.7, except for the Cronbach's Alpha and McDonald's Omega values for the second factor, which was slightly lower than 0.7 in the full sample as well as when stratified by study language. The PCA and CFA models for the scale demonstrated adequate fit with the Tucker-Lewis index (TLI), comparative fit index (CFI), and root mean square error of approximation (RMSEA), with TLI and CFI values above 0.9 and RMSEA values less than 0.08. However, the model demonstrated inadequate fit with the Chi-square indicator, which yielded a significant p-value. Individual factor loadings ranged from 0.50 to 0.95 in the full sample, 0.45 to 0.98 in the English sample, and 0.45 to 0.93 in the Luganda sample. Finally, the three PIES subscales aligned with reported seizure frequency and the seizure severity question from the LSSS. CONCLUSIONS: This study presents the first Luganda and Runyankole versions of the PIES, and the first validation of this scale in English and Luganda with patients with epilepsy in Uganda. The PIES was found to have acceptable psychometric properties for reliability and validity parameters. Thus, the scale is recommended for use and for further investigation in patients with epilepsy in Uganda. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".
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Epilepsia , Epilepsia/diagnóstico , Humanos , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários , UgandaRESUMO
OBJECTIVE: Epilepsy is a disease that is stigmatized globally. Several studies have introduced sensitization efforts to reduce stigma towards people with epilepsy (PWE) in various settings. Although sensitization efforts have shown some evidence of improved attitudes towards epilepsy, progress has been limited. This systematized literature review summarizes the existing literature concerning interventions that reduce stigma towards PWE. By conducting an overview of existing interventions, we aimed to consolidate knowledge and outcomes of existing efforts as well as highlight gaps and directions for future interventions. METHODS: We searched MEDLINE (via PubMed) and Embase for English-language studies published between January 1, 1970 and November 15, 2017 that focused on stigma reduction strategies for PWE in any global setting. Studies were included if they described a stigma reduction intervention for epilepsy. Studies were excluded if they were reviews, editorials, conference proceedings, abstracts, or did not discuss a stigma reduction intervention. We thematically grouped studies based on type(s) of intervention(s) addressed and summarized interventions, outcome measures, and results for each study included in the review. RESULTS: Of the 1975 initial citations, 32 studies met our inclusion criteria. Interventions clustered into four broad categories including public awareness interventions, policy-based interventions, school-based interventions, and interventions that targeted PWE themselves as well as their caregivers and peers. Efficacy of these interventions as reported by the authors was mixed. Many studies did not use validated outcome measures to assess stigma. CONCLUSIONS: Although intervention efforts have been made towards epilepsy stigma reduction at many levels, stigma towards and discrimination against PWE prevail worldwide. About 75% of the studies included in this review were conducted in high-income countries (HICs) despite the disproportional need in low- and middle-income countries (LMICs). Furthermore, robust outcome measures to assess efficacy in stigma reduction for interventions are lacking, calling into question the validity of reported outcomes for both positive and null findings. Therefore, more work is needed in both developing effective stigma reduction strategies, especially in LMICs, and validating tools to measure their efficacy. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".
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Epilepsia , Estigma Social , Atitude , Epilepsia/terapia , Humanos , Pobreza , UgandaRESUMO
OBJECTIVE: Epilepsy is one of the most prevalent, treatable neurological diseases globally. In sub-Saharan Africa, people with epilepsy (PWE) frequently seek treatment from traditional or pastoral healers, who are more accessible than biomedical care providers. This often contributes to the substantial time delay in obtaining adequate biomedical care for these patients. In Uganda, the few biomedical providers who can treat epilepsy cannot meet the great need for epilepsy care. Additionally, patients are often hesitant to seek biomedical care, often preferring the easily accessible and trusted sociocultural treatment options. This study sought to elucidate the barriers to biomedical care for PWE as well as identify potential solutions to overcome these barriers from various stakeholder perspectives. METHODS: This study used qualitative research methods. Semistructured interviews and focus group discussions were conducted with four major stakeholder groups: PWE or family members of PWE, neurologists and psychiatrists, traditional healers, and pastoral healers. All interviews and focus group discussions that were in English were audio recorded and transcribed verbatim. Those that were not in English were translated live and audio recorded. A translator later translated the non-English portion of audio recording to ensure proper interpretation. Two independent coders coded the dataset and conducted an inter-rater reliability (IRR) assessment to ensure reliable coding of the data. Thematic analysis was then performed to discern themes from the data and compare nuances between each of the study design groups. RESULTS: Participants discussed several different causes of epilepsy ranging from spiritual to biological causes, often incorporating elements of both. Commonly endorsed spiritual causes of epilepsy included witchcraft and ancestral spirits. Commonly endorsed biological causes included genetics, fever, malaria, and brain injury. For patients and families, beliefs about the cause of epilepsy often played a role in whom they chose to seek treatment from. Three major barriers to biomedical care were discussed: practical barriers, medical infrastructure barriers, and barriers related to stigma. Practical barriers related to issues such as transportation, cost of medical care, and distance to the nearest healthcare facility. Under medical infrastructure, drug stock-outs and lack of access to antiepileptic drugs (AEDs) were the most consistent problems stated among patients. Stigma was heavily discussed and brought up by nearly every participant. Additionally, three significant solutions to improving epilepsy care in Uganda were highlighted by participants: collaboration among treatment providers, community sensitization efforts to address stigma, and building medical infrastructure. Within building infrastructure, all participant types, except traditional healers, proposed the development of an epilepsy clinic designed to specifically treat epilepsy. CONCLUSIONS: Based on these findings, there are four critical interventions that should be considered for improving epilepsy care in Uganda: the creation of dedicated epilepsy clinics, infrastructure strengthening to address medication stock-outs, community outreach programs for sensitization, and collaboration between biomedical providers and traditional healers. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".
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Epilepsia , Epilepsia/terapia , Grupos Focais , Humanos , Pesquisa Qualitativa , Reprodutibilidade dos Testes , UgandaRESUMO
OBJECTIVE: Epilepsy, a neurological disorder with effective biomedical treatment, remains largely untreated in Uganda. Potential reasons for this treatment gap (TG) include limited access to trained providers and clinics, social stigmata of seizures, cultural beliefs, or lack of public understanding of epilepsy as a treatable condition. The current study aimed to formally evaluate barriers faced by people with epilepsy (PWE) in Uganda when seeking biomedical care. METHODS: In a cross-sectional study, 435 participants drawn from a community prevalence study were enrolled. We included participants reporting a history of recurrent seizures suggestive of epilepsy, who completed a survey about barriers to obtaining care for their symptoms. Principal axis factor analysis (PFA) using a promax rotation was conducted for data reduction. Frequencies of barrier factors were compared across those who did not seek care for epilepsy (nâ¯=â¯228), those who sought care from biomedical facilities (nâ¯=â¯166), and those who sought care from a traditional or pastoral healer (nâ¯=â¯41). RESULTS: The PFA yielded a five-factor solution: 1) logistical and actual costs; 2) treatment effectiveness; 3) influence of the opinion of others; 4) doctors' care; and 5) contextual factors impacting decision-making. Variables related to logistical and actual costs were most endorsed. Comparison of groups by care sought did not reveal a difference in endorsement of factors, with the exception that those who sought biomedical care were more likely to endorse factors related to doctors' care compared with those that sought care from traditional or pastoral healers (Pâ¯=â¯.005). CONCLUSIONS: People with repetitive seizures in Uganda report several barriers to obtaining biomedical care in Uganda, with those related to practical and actual costs endorsed the most. It is imperative that interventions developed to reduce the TG in Uganda consider these practical issues to improve access to effective epilepsy care. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda.
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Epilepsia , Estudos Transversais , Epilepsia/epidemiologia , Epilepsia/terapia , Humanos , Inquéritos e Questionários , Uganda/epidemiologiaRESUMO
OBJECTIVE: The objective of the study was to characterize and compare the attitudes, beliefs, and perceptions about epilepsy across community and patient cohorts in Uganda. METHODS: This was a descriptive study utilizing two samples: a randomly selected, national survey community sample and a hospital-based patient sample of people with epilepsy (PWE) and their caregivers attending clinic settings in Kampala and Mbarara, Uganda for epilepsy care. Both samples were surveyed about their beliefs about epilepsy, its treatment, and people who have the illness. Multivariate linear regression was used to examine group differences and variables associated with specific beliefs. RESULTS: Among the 15,818 community survey participants who participated in this study, 435 study participants reported symptoms suggestive of recurrent seizures, and all 626 subjects in the hospital-based sample had confirmed epilepsy. Results revealed significant differences across groups in their endorsement of epilepsy as a contagion; 37% of people in the community unaffected by epilepsy, and 39% of people with suspected epilepsy who did not seek care believed that epilepsy was contagious by touch, in contrast to 8% of PWE or their caregivers attending regular hospital-based care. Higher educational attainment and income, and seeking regular hospital-based medical care were associated with less endorsement of epilepsy as a contagion, while age, education, income, area of residence, and presence of seizure symptoms, were significant predictors of support or belief in the basic rights of PWE. Study participants within the community who screened negative for seizures placed the most restrictions on rights for PWE. To varying degrees, the samples all endorsed the effectiveness of allopathic, traditional, and religious providers, and the use of pharmaceutical drugs, traditional rituals and herbs, and prayer. CONCLUSIONS: People with epilepsy who are attending biomedical care for routine epilepsy care think differently about epilepsy, its treatment, and the rights of those with the disease than the general population. Within the community setting, more erroneous beliefs and negative attitudes about epilepsy and PWE persist, and they not only contribute to stigma but also interfere with the patients' health-seeking behavior. Further confounding the care of PWE, the pluralistic healthcare system in Uganda is evident in endorsements spanning biomedical, traditional, and religious treatment methods. Focused awareness campaigns utilizing local epilepsy societies are needed to promote epilepsy health literacy, to favorably impact acceptance and opportunities for PWE in Uganda, and to facilitate efficient uptake of biomedical care. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".
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Epilepsia , Conhecimentos, Atitudes e Prática em Saúde , Epilepsia/epidemiologia , Epilepsia/terapia , Humanos , Estigma Social , Inquéritos e Questionários , Uganda/epidemiologiaRESUMO
OBJECTIVE: This study sets out to describe the current demographics of people with epilepsy (PWE) attending hospital-based care in Uganda and the epilepsy treatment practices within three of the largest Ugandan public referral hospitals. METHODS: In a six-month prospective cohort study, 626 children and adults attending epilepsy clinics at Mulago National Referral Hospital, Butabika National Referral Mental Hospital and Mbarara Regional Referral Hospital were enrolled. Using a study questionnaire, data were collected at baseline and at 3â¯weeks, 3â¯months, and 6â¯months following enrollment. Specific data surrounding individual patient demographics, clinical characteristics and severity of epilepsy, and treatment of epilepsy with antiepileptic drugs (AEDs) were collected. RESULTS: Female patients totaled to 50.8%, with a nearly equal gender distribution at each hospital. There was no statistical difference in gender or age between sites. The majority of PWE had completed primary school, with less than 15% of patients completing more than a secondary education. Seizure severity was high, with most patients having multiple seizures per week at the initial onset of epilepsy, and greater than 90% of patients reporting a loss of consciousness with seizures. The majority of patients (54.95%) also reported a developmental or learning delay. Most patients were on 1 AED (46.01%) or 2 AEDs (36.90%), with carbamazepine being the most frequently prescribed AED. There was a trend towards improved seizure severity over the follow-up period, as assessed by the corresponding Personal Impact of Epilepsy Scale (PIES) subscale. CONCLUSIONS: People with epilepsy attending hospital-based care in Uganda tend to have severe forms of epilepsy requiring management with AEDs. Current hospital-based practices show a positive trend for seizure burden and quality of life of PWE in Uganda. Further interventions to improve overall access to biomedical care are required to continue to advance the management of PWE across all communities. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".
Assuntos
Epilepsia , Qualidade de Vida , Adulto , Anticonvulsivantes/uso terapêutico , Criança , Epilepsia/tratamento farmacológico , Epilepsia/epidemiologia , Feminino , Hospitais , Humanos , Estudos Prospectivos , Encaminhamento e Consulta , Uganda/epidemiologiaRESUMO
OBJECTIVE: Epilepsy is a global public health concern, with the majority of cases occurring in lower- and middle-income countries where the treatment gap remains formidable. In this study, we simultaneously explore how beliefs about epilepsy causation, perceived barriers to care, seizure disorder characteristics, and demographics influence the initial choice of healthcare for epilepsy and its impact on attaining biomedical care (BMC). METHODS: This study utilized the baseline sample (nâ¯=â¯626) from a prospective cohort study of people with epilepsy (PWE) attending three public hospitals in Uganda (Mulago National Referral Hospital, Butabika National Referral Mental Hospital, and Mbarara Regional Referral Hospital) for epilepsy care. Patient and household demographics, clinical seizure disorder characteristics, and sociocultural questionnaires were administered. Logistic regression and principal component analyses (PCA) were conducted to examine associations with the choice of primary seizure treatment. RESULTS: The sample was 49% female, and 24% lived in rural settings. A biomedical health facility was the first point of care for 355 (56.7%) participants, while 229 (36.6%) first sought care from a traditional healer and 42 (6.7%) from a pastoral healer. Preliminary inspection of candidate predictors using relaxed criteria for significance (pâ¯<â¯0.20) identified several factors potentially associated with a greater odds of seeking BMC first. Demographic predictors included older caredriver (decision-maker for the participant) age (odds ratio [OR]: 1.01, 95% confidence interval [CI]: [0.99, 1.02], p-value: 0.09), greater caredriver education level (ORâ¯=â¯1.21, 95% CI: [1.07, 1.37], p-valueâ¯=â¯0.003), and lower ratio of sick to healthy family members (ORâ¯=â¯0.77 [0.56, 1.05], Pâ¯=â¯0.097). For clinical predictors, none of the proposed predictors associated significantly with seeking BMC first. Self-report causation predictors associated with a greater odds of seeking BMC first included higher belief in biological causes of epilepsy (ORâ¯=â¯1.31 [0.92, 1.88], Pâ¯=â¯0.133) and lower belief in socio-spiritual causes of epilepsy (ORâ¯=â¯0.68 [0.56, 0.84], Pâ¯<â¯0.001). In the multivariate model, only higher caredriver education (ORâ¯=â¯1.19 [1.04, 1.36], Pâ¯=â¯0.009) and lower belief in socio-spiritual causes of epilepsy (ORâ¯=â¯0.69 [0.56, 0.86], Pâ¯<â¯0.01) remained as predictors of seeking BMC first. Additionally, PCA revealed a pattern which included high income with low beliefs in nonbiological causes of epilepsy as being associated with seeking BMC first (ORâ¯=â¯1.32 [1.12, 1.55], pâ¯=â¯0.001). Despite reaching some form of care faster, individuals seeking care from traditional or pastoral healers experienced a significant delay to eventual BMC (Pâ¯<â¯0.001), with an average delay of more than two years (traditional healer: 2.53â¯years [1.98, 3.24]; pastoral care: 2.18 [1.21, 3.91]). CONCLUSIONS: Coupled with low economic and educational status, belief in spiritual causation of epilepsy is a dominant determinant of opting for traditional or pastoral healing over BMC, regardless of concurrent belief in biological etiologies. There is a prolonged delay to eventual BMC for PWE who begin their treatment seeking with nonallopathic providers, and although nonallopathic healers provide PWE with benefits not provided by BMC, this notable delay likely prevents earlier administration of evidence-based care with known efficacy. Based on these findings, initiatives to increase public awareness of neurobiological causes of epilepsy and effectiveness of biomedical drug treatments may be effective in preventing delays to care, as would programs designed to facilitate cooperation and referral among traditional, faith-based, and biomedical providers. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".
Assuntos
Epilepsia , Aceitação pelo Paciente de Cuidados de Saúde , Atenção à Saúde , Epilepsia/epidemiologia , Epilepsia/terapia , Feminino , Humanos , Masculino , Estudos Prospectivos , Uganda/epidemiologiaRESUMO
OBJECTIVE: In Uganda, causal attributions for epilepsy reflect a variety of beliefs and impact care-seeking behavior, perpetuate stigma, and undermine the effectiveness of interventions to narrow the epilepsy treatment gap. The objective of this study was to characterize beliefs about seizure etiology to gain a better understanding of how epilepsy is conceptualized in the community in order to inform culturally appropriate educational policies and interventions. METHODS: In a community-based study, 15,383 participants were surveyed about beliefs related to 15 potential causes for epilepsy. Principal axis factor analysis (PFA) was performed to identify causative factors and then utilized to classify singular versus pluralistic belief systems related to epilepsy etiology. Analysis of variance (ANOVA) and Mann-Whitney U-tests were conducted to examine the differences in background characteristics across the etiology belief groups. RESULTS: Three main causative factors emerged from the PFA: biological, sociospiritual, and biospiritual. Among those endorsing at least one factor (nâ¯=â¯13,036), the biological factor was endorsed most frequently as a potential cause for epilepsy (88.0%), followed by the sociospiritual (63.4%), then biospiritual (47.6%). Review of the patterns of endorsement found that only 22.2% endorsed the biological factor alone, 6.7% the sociospiritual factor alone, and 2.8% the biospiritual factor alone (total 31.7%). The remainder endorsed a combination of two or all three factors as being potentially causal, and most (65.7%) endorsed a pluralistic combination inclusive of a biological etiology. Group comparisons showed that endorsing only the biological factor was associated with the highest levels of education (pâ¯<â¯0.01), the pluralistic group had the highest ratio of people in the household who needed assistance to those that could provide aid (pâ¯<â¯0.01), and there were significant differences in income across specific groups (pâ¯<â¯0.01). CONCLUSIONS: Pluralistic attributions for epilepsy are common in Uganda, with the majority of community members drawing from biomedical and traditional concepts to construct complex explanations for seizures that transcend discrete belief categories traditionally depicted in the literature. These findings emphasize the need to understand cultural beliefs about epilepsy in order to design contextually specific interventions and education programs, which respect the fundamental beliefs and values of the community. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".
Assuntos
Epilepsia , Aceitação pelo Paciente de Cuidados de Saúde , Causalidade , Epilepsia/epidemiologia , Epilepsia/etiologia , Humanos , Estigma Social , Uganda/epidemiologiaRESUMO
BACKGROUND: The HerpeSelect 2 ELISA IgG test for herpes simplex virus type 2 (HSV-2) infection is widely used, convenient, and inexpensive. However, it has been shown to have lower specificity among populations in Sub-Saharan Africa compared with HSV-2 tests regarded as criterion standards. METHODS: In 2016, we collected blood and survey data from 248 women participating in a community-based cohort study in rural Malawi (the Umoyo wa Thanzi project). Using multinomial logistic regression accounting for village-level clustering, we examined unadjusted associations between select demographic and sexual risk factors and HSV-2 serostatus. Because increasing the index value cutpoint for a positive result improves specificity, we coded HSV-2 serostatus in 2 ways: the manufacturer's recommended cutpoints (<0.9, negative; 0.9-1.1, indeterminate; >1.1, positive) and modified cutpoints with improved specificity (<0.9, negative; 0.9-3.5, indeterminate; >3.5, positive). We aimed to investigate whether associations between select risk factors and HSV-2 serostatus varied under the 2 approaches. RESULTS: The prevalence of HSV-2 in this sample was 67% under the manufacturer's cutpoint and 22% under the modified cutpoint. Under both cutpoints, age, household size, number of marriages, and number of pregnancies were associated with HSV-2-positive serostatus. Using modified cutpoints, current bacterial vaginosis (odds ratio [OR], 3.17; 95% confidence interval [CI], 1.35-7.47), partner concurrency (OR, 4.88; 95% CI, 2.54-9.37) and unsure about partner concurrency (OR, 1.91; 95% CI, 1.08-3.38) were associated with HSV-2 seropositivity. Household size, education, and marital status were the only variables significantly associated with indeterminate HSV-2 serostatus using the modified cutpoints. CONCLUSION: HSV-2-focused interventions informed by identifying individuals likely to have or acquire HSV-2 must be aware that different target populations may emerge depending on which cutpoints are adopted.
Assuntos
Herpes Genital , Herpes Simples , Anticorpos Antivirais/sangue , Estudos de Coortes , Feminino , Herpes Genital/epidemiologia , Herpes Simples/epidemiologia , Herpesvirus Humano 2/imunologia , Humanos , Malaui/epidemiologia , Gravidez , Fatores de Risco , Estudos SoroepidemiológicosRESUMO
Objectives. To examine abortion utilization in Ohio from 2010 to 2018, a period when more than 15 abortion-related laws became effective.Methods. We evaluated changes in abortion rates and ratios examining gestation, geographic distribution, and abortion method in Ohio from 2010 to 2018. We used data from Ohio's Office of Vital Statistics, the Centers for Disease Control and Prevention's Abortion Surveillance Reports, the American Community Survey, and Ohio's Public Health Data Warehouse.Results. During 2010 through 2018, abortion rates declined similarly in Ohio, the Midwest, and the United States. In Ohio, the proportion of early first trimester abortions decreased; the proportion of abortions increased in nearly every later gestation category. Abortion ratios decreased sharply in most rural counties. When clinics closed, abortion ratios dropped in nearby counties.Conclusions. More Ohioans had abortions later in the first trimester, compared with national patterns, suggesting delays to care. Steeper decreases in abortion ratios in rural versus urban counties suggest geographic inequity in abortion access.Public Health Implications. Policies restricting abortion access in Ohio co-occur with delays to care and increasing geographic inequities. Restrictive policies do not improve reproductive health.