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Objective: Many people report becoming pregnant while using contraception. Understanding more about this phenomenon may provide insight into pregnant people's responses to and healthcare needs for these pregnancies. This study explores the outcome (e.g., birth, miscarriage, abortion) of pregnancies among Veterans in which conception occurred in the month of contraceptive use. Study Design: We used data from the Examining Contraceptive Use and Unmet Need Study, a telephone-based survey conducted in 2014-2016 of women Veterans (n = 2302) ages 18-44 receiving primary care from the Veterans Health Administration. For each pregnancy, we estimated the relationship between occurrence in the month of contraceptive use and the outcome of the pregnancy using multinomial logistic regression, controlling for relevant demographic, clinical, and military factors and clustering of pregnancies from the same Veteran. Results: The study included 4436 pregnancies from 1689 Veterans. Most participants were ≥30 years of age (n = 1445, 85.6%), identified as non-Hispanic white (n = 824, 51.6%), and lived in the Southern United States (n = 994, 55.6%). Nearly 60% (n = 1007) of Veterans who had ever been pregnant reported experiencing a pregnancy in the month of contraceptive use; a majority of those pregnancies (n = 1354, 80.9%) were described as unintended. In adjusted models, pregnancies occurring in the month of contraceptive use were significantly more likely to end in abortion (aOR: 1.76, 95% CI: 1.42-2.18) than live birth. Conclusions: Pregnancy while using contraception is common among Veterans; these pregnancies are more likely to end in abortion than live birth. Given widespread restrictions to reproductive health services across much of the United States, ensuring Veterans' access to comprehensive care, including abortion, is critical to supporting reproductive autonomy and whole health.
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Importance: Tubal sterilization is common, especially among individuals with low income. There is substantial misunderstanding about sterilization among those who have undergone the procedure, suggesting suboptimal decision-making about a method that permanently ends reproductive capacity. Objective: To test the efficacy of a web-based decision aid for improving tubal sterilization decision quality. Design, Setting, and Participants: This randomized clinical trial conducted between March 2020 and November 2023 included English- or Spanish-speaking pregnant cisgender women aged 21 to 45 years who had Medicaid insurance and were contemplating tubal sterilization after delivery. Participants were recruited from outpatient obstetric clinics in 3 US cities. Intervention: Participants were randomized 1:1 to usual care (control arm) or to usual care plus a web-based decision aid (MyDecision/MiDecisión) (intervention arm). The aid includes written, audio, and video information about tubal sterilization procedures; an interactive table comparing contraceptive options; values-clarifying exercises; knowledge checks; and a summary report. Main Outcomes and Measures: The co-primary outcomes were tubal sterilization knowledge and decisional conflict regarding the contraceptive decision. Knowledge was measured as the percentage of correct responses to 10 true-false items. Decisional conflict was measured using the low-literacy Decision Conflict Scale, with lower scores on a range from 0 to 100 indicating less conflict. Results: Among the 350 participants, mean (SD) age was 29.7 (5.1) years. Compared with the usual care group, participants randomized to the decision aid had significantly higher tubal sterilization knowledge (mean [SD] proportion of questions answered correctly, 76.5% [16.9%] vs 55.6% [22.6%]; P < .001) and lower decisional conflict scores (mean [SD], 12.7 [16.6] vs 18.7 [20.8] points; P = .002). The greatest knowledge differences between the 2 groups were for items about permanence, with more participants in the intervention arm answering correctly that tubal sterilization is not easily reversible (90.1% vs 39.3%; odds ratio [OR], 14.2 [95% CI, 7.9-25.4]; P < .001) and that the tubes do not spontaneously "come untied" (86.6% vs 33.7%; OR, 13.0 [95% CI, 7.6-22.4]; P < .001). Conclusions and Relevance: MyDecision/MiDecisión significantly improved tubal sterilization decision-making quality compared with usual care only. This scalable decision aid can be implemented into clinical practice to supplement practitioner counseling. These results are particularly important given the recent increase in demand for permanent contraception after the US Supreme Court decision overturning federal abortion protections. Trial Registration: ClinicalTrials.gov Identifier: NCT04097717.
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Esterilização Tubária , Feminino , Humanos , Gravidez , Anticoncepção , Anticoncepcionais , Técnicas de Apoio para a Decisão , Gestantes , Estados Unidos , Adulto Jovem , Adulto , Pessoa de Meia-IdadeRESUMO
Pregnancy intention screening does not identify need for pregnancy prevention and ignores the nuances of lived experiences while reinforcing white middle-class normative expectations. Asking about desire for contraception is a patient-centered approach to meeting people's needs.
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Anticoncepção , Humanos , Feminino , Gravidez , Anticoncepção/métodos , Intenção , Serviços de Planejamento FamiliarRESUMO
Medicare is the primary source of health insurance coverage for reproductive-age people with Social Security Disability Insurance. However, Medicare does not require contraceptive coverage for pregnancy prevention, and little is known about contraceptive use in traditional Medicare and Medicare Advantage. We analyzed Medicare and Optum data to assess variations in contraceptive use and methods used by traditional Medicare and Medicare Advantage enrollees, as well as among enrollees with and without noncontraceptive clinical indications. Clinically indicated contraceptives are used for reasons other than pregnancy prevention, including menstrual regulation or to treat acne, menorrhagia, and endometriosis. Contraceptive use was higher among Medicare Advantage enrollees than traditional Medicare enrollees, but use in both populations was low compared with contraceptive use among Medicaid enrollees. We found significant variation by Medicare type with respect to contraceptive methods used. Relative to traditional Medicare, the probability of long-acting reversible contraception was more than three times higher in Medicare Advantage, and the probability of tubal sterilization was more than ten times higher. Overall, Medicare enrollees with noncontraceptive clinical indications had twice the probability of contraceptive use as those without them. Medicare coverage of all contraceptive methods without cost sharing would help address financial barriers to contraceptives and support the reproductive autonomy of disabled enrollees.
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Anticoncepcionais , Medicare Part C , Idoso , Estados Unidos , Feminino , Gravidez , Humanos , Anticoncepção , Medicaid , Custo Compartilhado de SeguroRESUMO
BACKGROUND: People with cystic fibrosis (CF) are increasingly considering their reproductive goals. We developed MyVoice:CF, a web-based patient-centered reproductive decision support tool and assessed its implementation in CF care. METHODS: We conducted a feasibility trial among 18-44-year-old women with CF and multidisciplinary CF providers. Prior to CF clinic visit, patient participants completed a baseline survey, used MyVoice:CF, and assessed acceptability, appropriateness, and usability. After clinic, participants rated impact on reproductive health communication. At 3 months post-use, participants assessed impact on reproductive health outcomes. Provider participants completed a survey and focus group regarding MyVoice:CF feasibility/implementation. We assessed outcomes descriptively. We compared MyVoice:CF's impact on outcomes from baseline to follow-up using McNemar's and Wilcoxon signed rank tests as appropriate. RESULTS: Forty-three patient participants completed baseline surveys and 40 rated MyVoice:CF's feasibility; 10 providers participated. Patient participants rated MyVoice:CF's acceptability as 4.48±0.50 out of 5, appropriateness as 4.61±0.48 out of 5, and usability as 82.25±11.02 ('A'/excellent). After MyVoice:CF use, participants reported improved reproductive health communication self-efficacy vs. baseline (3.54±1.17vs.3.95±0.93, p<0.001). At baseline, 36% of participants reported any discussion of reproductive goals/plans with their CF team in the past year compared to 59% after first visit post-MyVoice:CF use (p=0.049). Provider participants similarly rated MyVoice:CF as feasible and reported no negative impacts on clinic flow after implementation. CONCLUSIONS: MyVoice:CF is acceptable, appropriate, and usable for those with CF. Preliminary effectiveness evaluation suggests that MyVoice:CF improves self-efficacy in and frequency of reproductive health communication. Future studies should further assess MyVoice:CF's impact on reproductive health communication and outcomes.
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Objective: To develop a patient-centered, web-based decision aid to support informed and value-concordant decision making among Medicaid enrollees considering tubal sterilization. Methods: We used the Ottawa Decision Support Framework and the International Patient Decision Aids Standards (IPDAS) to guide systematic development of our decision aid. We interviewed 15 obstetrician-gynecologists and 40 women, who had considered or were considering tubal sterilization. A Steering Committee-comprising healthcare providers, social scientists, reproductive health and justice advocates, and people with lived experience-provided feedback and direction. We developed English and Spanish prototypes, which were beta tested with 24 women. Results: The resulting web-based My Decision/Mi Decisión tool (English/Spanish) includes written and video information about tubal sterilization procedures; an interactive table of contraception options; values clarification exercises; reflection and deliberation; knowledge checks; and a summary report to share with one's provider. Users found the decision aid to be informative, engaging, easy to use, and helpful in informing contraception decision making. Conclusion: My Decision/Mi Decisión is a scalable tool that could be implemented widely to support informed decision making about tubal sterilization. Innovation: This is a novel and timely web-based decision tool for tubal sterilization, when demand for permanent contraception is rapidly increasing post-Dobbs. While designed for Medicaid enrollees, further investigation will explore more generalized use.
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OBJECTIVE: Integration of reproductive health services into comprehensive primary care is increasingly viewed as a strategy to address service gaps and improve patient-centered care. We assess receipt of contraceptive and prepregnancy health counseling among pregnancy-capable Veterans within Veterans Affairs (VA) primary care. STUDY DESIGN: Data are from 1076 participants in a nationally representative, cross-sectional survey of women Veterans ages 18 to 45 with an overall survey response rate of 28%. Descriptive analyses and chi square tests of association were performed. RESULTS: Only 44% of pregnancy-capable Veterans reported receiving any contraceptive and/or prepregnancy care from a VA primary care provider in the past year. CONCLUSIONS: Although VA guidelines include reproductive services as a core component of primary care, additional efforts may be needed to promote routine provision of this care in practice.
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Serviços de Saúde Reprodutiva , Veteranos , Gravidez , Estados Unidos , Feminino , Humanos , Adolescente , Adulto Jovem , Adulto , Pessoa de Meia-Idade , Estudos Transversais , United States Department of Veterans Affairs , Assistência Centrada no Paciente , AnticoncepcionaisRESUMO
OBJECTIVES: Evidence shows many misconceptions exist around permanent contraception, and there are numerous barriers to accessing the procedure. This qualitative study explored physician perspectives regarding patients' informational and decision-support needs, the complexities and challenges of counseling and access, and how these factors may differ for people living on lower incomes. STUDY DESIGN: We conducted 15 semistructured, telephone interviews with obstetrician-gynecologists in three geographic regions of the United States to explore their perspectives on providing permanent contraception counseling and care. We analyzed the interviews using content analysis. RESULTS: Physicians discussed a tension between respecting individual reproductive autonomy and concern for future regret; they wanted to support patients' desire for permanent contraception but were frequently concerned patients did not have the information they needed or the foresight to make high-quality decisions. Physicians also identified barriers to counseling including lack of time, lack of continuity over the course of prenatal care, and baseline misinformation among patients. Physicians identified additional barriers in providing a postpartum procedure even after thedecision was made including lack of personnel and operating room availability. Finally, physicians felt that people living on lower incomes faced more challenges in access primarily due to the sterilization consent regulations required by Medicaid. CONCLUSIONS: Physicians report numerous challenges surrounding permanent contraception provision and access. Strategies are needed to support physicians and patients to enhance high-quality, patient-centered sterilization decision making and ensure that patients are able to access a permanent contraceptive procedure when desired. IMPLICATIONS: This qualitative study demonstrates the various challenges faced by physicians to support permanent contraception decision making. These challenges may limit patients' access to the care they desire. This study supports the need to transform care delivery models and improve the federal sterilization policy to ensure equitable patient-centered access to desired permanent contraception. DISCLAIMER: Although the term permanent contraception has increasingly replaced the word sterilization in clinical settings, we use sterilization in some places throughout this paper as that was the standard terminology at the time the interviews were conducted and the language the interviewed physicians used.
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Anticoncepção , Médicos , Gravidez , Feminino , Humanos , Estados Unidos , Esterilização Reprodutiva , Anticoncepcionais , Período Pós-PartoRESUMO
OBJECTIVE: Rheumatologists have identified challenges to providing sexual and reproductive health (SRH) care to patients with gestational capacity. We conducted focus groups with rheumatologists and rheumatology advanced practice providers (APPs) to elicit their solutions to overcoming barriers to SRH care. METHODS: Qualitative focus groups were conducted with rheumatologists (3 groups) and APPs (2 groups) using videoconferencing. Discussions were transcribed and 2 trained research coordinators developed a content-based codebook. The coordinators applied the codebook to transcripts, and discrepancies were adjudicated to full agreement. The codes were synthesized and used to conduct a thematic analysis. Differences in codes were also identified between the clinician groups by provider type. RESULTS: A total of 22 clinicians were included in the sample, including 12 rheumatologists and 10 APPs. Four themes emerged: (1) clinicians recommended preparing patients to engage in SRH conversations before and during clinic visits; (2) consultation systems are needed to facilitate rapid SRH care with women's health providers; (3) clinicians advised development of training opportunities and easy-to-access resources to address SRH knowledge gaps; and (4) clinicians recommended that educational materials about SRH in the rheumatology context are provided for patients. Although similar ideas were generated between the APP and rheumatologist groups, the rheumatologists were generally more interested in additional training and education, whereas APPs were more interested in electronic health record prompts and tools. CONCLUSION: Providers identified many potential solutions and facilitators to enhancing SRH care in rheumatology that might serve as a foundation for intervention development.
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Saúde Reprodutiva , Reumatologia , Humanos , Feminino , Saúde Reprodutiva/educação , Grupos Focais , Reumatologistas , Comportamento SexualRESUMO
OBJECTIVES: Crisis pregnancy centers (CPCs) seek to dissuade people from having abortions. Twenty-five states have policies supporting CPCs. We aimed: (1) to characterize access to early pregnancy confirmation at CPCs compared to abortion facilities nationwide and (2) to understand the role of state CPC policy in service access. STUDY DESIGN: We conducted a national mystery caller study of 445 CPCs and geographically paired abortion facilities, posing as patients seeking pregnancy confirmation. Facility type (CPC vs abortion facility) was the primary exposure in Aim 1. Wait time to first available early pregnancy appointment was the primary outcome. In Aim 2, state-level CPC policy designation (supportive vs not supportive of CPCs) was the primary exposure. Difference in wait time ≥7 days to first available appointment between CPCs and paired abortion facilities was the primary outcome. RESULTS: CPCs were more likely than abortion facilities to provide same-day appointments (68.5% vs 37.2%, p < 0.0001), and free pregnancy testing (98.0% vs 16.6%, p < 0.0001). The median wait to first available appointment at a CPC was 0 days (IQR 0,1), compared to 1 day at abortion facilities (IQR 0, 5), p < 0.0001. In states with supportive CPC policy environments, abortion facilities were less likely to have wait times exceeding their paired CPC by a week or more, compared to paired facilities in states with non-supportive CPC policy environments (p = 0.033). This remained true after adjusting for state abortion policy environment (p = 0.011). CONCLUSIONS: Pregnancy confirmation is more accessible at CPCs compared to abortion facilities. Factors other than state-level CPC policies likely influence service accessibility. There is a need for improved access to pregnancy confirmation in medical settings. IMPLICATIONS: Our findings demonstrating that pregnancy confirmation is more accessible at crisis pregnancy centers than at abortion facilities are predicted to be exacerbated in the wake of abortion clinic closures following the Dobbs v Jackson Women's Health Organization Supreme Court decision. This highlights the need for improved funding and support for pregnancy confirmation service delivery in medical settings, including abortion facilities.
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Aborto Induzido , Gravidez , Estados Unidos , Feminino , Humanos , Instituições de Assistência Ambulatorial , Agendamento de Consultas , Acessibilidade aos Serviços de SaúdeRESUMO
This Viewpoint discusses the exclusion of abortion care from many established medical sources (such as hospitals) and from coverage by many major payers and how the health care system should legitimize and ensure clinician training in safe abortion care.
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Aborto Induzido , Cumplicidade , Acessibilidade aos Serviços de Saúde , Feminino , Humanos , Gravidez , Aborto Induzido/ética , Acessibilidade aos Serviços de Saúde/ética , Ética MédicaRESUMO
This Viewpoint discusses the US Department of Veterans Affairs' decision to offer abortion counseling and care to veterans in cases of rape, incest, and life or health endangerment, and how insights from this decision may be shared with other health care systems.
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Aborto Induzido , Veteranos , Gravidez , Feminino , Humanos , Serviços de Planejamento FamiliarRESUMO
BACKGROUND: Counseling to identify and support individuals' desires for family formation is a key component of preventive health care that is often absent in primary care visits. This study evaluates a novel, web-based, person-centered intervention to increase the frequency and quality of communication about reproductive goals and healthcare needs in Veterans Health Administration (VA) primary care. METHODS: We describe a hybrid type 1 effectiveness-implementation cluster randomized controlled trial in seven VA healthcare systems testing a web-based reproductive health decision support tool (MyPath). VA primary care providers are enrolled and randomized to intervention or usual care arms. Veterans scheduled to see intervention-arm providers receive a text message inviting them to use MyPath ahead of their appointment; Veterans scheduled to see control-arm providers receive usual care. Target enrollment is 36 providers and 456 Veterans. Outcomes are assessed by Veteran self-report after the visit and at 3- and 6-months follow-up. The primary outcome is occurrence of reproductive health discussions involving shared decision making; secondary outcomes include measures of communication, knowledge, decision conflict, contraceptive utilization, and receipt of services related to prepregnancy health. Data on implementation barriers, facilitators and cost are collected. RESULTS: The trial is ongoing with no results to report. We have enrolled 36 primary care providers across 7 VA healthcare systems and recruitment of Veterans is ongoing. CONCLUSIONS: Results will inform efforts to increase the quality and person-centeredness of reproductive healthcare delivery in primary care and to operationalize and scale up use of digital decision support tools in clinical settings. TRIAL REGISTRATION: http://ClinicalTrials.gov Identifier: NCT04584294 Trial Status: Recruiting.
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Veteranos , Humanos , Veteranos/psicologia , Aconselhamento , Atenção à Saúde , Atenção Primária à Saúde/métodos , Internet , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
OBJECTIVE: To evaluate the association between state Medicaid coverage for abortion and abortion access measures among U.S. patients. METHODS: We analyzed data from the Guttmacher Institute's 2014 Abortion Patient Survey. Respondents were included if they reported being enrolled in Medicaid, regardless of whether Medicaid covered the abortion. The exposure was self-report of residence in a state where Medicaid can be used to pay for abortion. Access outcomes included more than 14 days' wait time between decision for abortion and abortion appointment, presentation at more than 10 weeks of gestation when in the first trimester, and travel time more than 60 minutes to the clinic. Multivariable regression was performed to test the association between state Medicaid abortion coverage and dichotomous access outcomes, controlling for patient demographics. RESULTS: Of 2,579 respondents enrolled in Medicaid who reported state of residence, 1,694 resided in states with Medicaid coverage for abortion and 884 resided in states without Medicaid coverage for abortion. Patients residing in states with Medicaid coverage for abortion had lower odds and rates of waiting more than 14 days between deciding to have an abortion and the appointment (adjusted odds ratio [aOR] 0.70; 95% CI 0.57-0.85, 66.8% vs 74.1%, P <.001), having abortions at more than 10 weeks of gestation when in the first trimester (aOR 0.62; 95% CI 0.49-0.80, 13.6% vs 20.1%, P <.001), and traveling more than 60 minutes to the abortion clinic (aOR 0.63; 95% CI 0.51-0.78, 18.7% vs 27.6%, P <.001) when compared with patients residing in states without Medicaid coverage for abortion. CONCLUSION: Availability of state Medicaid coverage for abortion is associated with increased abortion access. Our findings support repealing the Hyde Amendment to promote equitable access to reproductive health care, particularly in the post-Roe era.
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Aborto Induzido , Medicaid , Gravidez , Feminino , Estados Unidos , Humanos , Primeiro Trimestre da Gravidez , Viagem , Acessibilidade aos Serviços de SaúdeAssuntos
Aborto Induzido , Veteranos , Feminino , Acessibilidade aos Serviços de Saúde , Humanos , Gravidez , GestantesRESUMO
BACKGROUND: High-quality contraceptive counseling is critical to support Veterans' reproductive autonomy and promote healthy outcomes. OBJECTIVE: To describe perceived quality of contraceptive counseling in Veterans Health Administration (VA) primary care and assess factors associated with perceived high- and low-quality contraceptive counseling. DESIGN: Cross-sectional study using data from the Examining Contraceptive Use and Unmet Need in women Veterans (ECUUN) national telephone survey. PARTICIPANTS: Veterans aged 18-44 who received contraceptive services from a VA primary care clinic in the past year (N=506). MAIN MEASURES: Perceived quality of contraceptive counseling was captured by assessing Veterans' agreement with 6 statements regarding provider counseling adapted from the Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey. High-quality counseling was defined as a top score of strongly agreeing on all 6 items; low-quality counseling was defined as not agreeing (neutral, disagreeing, or strongly disagreeing) with >3 items. We constructed two multivariable models to assess associations between patient-, provider-, and system-level factors and perceived high-quality (Model 1) and perceived low-quality counseling (Model 2). KEY RESULTS: Most participants strongly agreed that their providers listened carefully (74%), explained things clearly (77%), and spent enough time discussing things (71%). Lower proportions strongly agreed that their provider discussed more than one option (54%), discussed pros/cons of various methods (44%), or asked which choice they thought was best for them (62%). In Model 1, Veterans who received care in a Women's Health Clinic (WHC) had twice the odds of perceiving high-quality counseling (aOR=1.99; 95%CI=1.24-3.22). In Model 2, Veterans who received care in a WHC (aOR=0.49; 95%CI=0.25-0.97) or from clinicians who provide cervical cancer screening (aOR=0.49; 95%CI=0.26-0.95) had half the odds of perceiving low-quality counseling. CONCLUSIONS: Opportunities exist to improve the quality of contraceptive counseling within VA primary care settings, including more consistent efforts to seek patients' perspectives with respect to contraceptive decisions.
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Neoplasias do Colo do Útero , Veteranos , Anticoncepcionais , Aconselhamento , Estudos Transversais , Detecção Precoce de Câncer , Feminino , Humanos , Atenção Primária à Saúde , Estados Unidos , United States Department of Veterans Affairs , Veteranos/psicologiaRESUMO
Vasectomy is used less often than female sterilization, and many men who do not want more children may lack accurate information about vasectomy. Between May and June 2018, we used a nationally representative online panel to survey U.S. men between 25 and 55 years of age who did not want more children about their vasectomy knowledge. We also asked about interest in undergoing the procedure if it were free or low cost and explored whether a paragraph addressing common misperceptions was associated with interest. We assessed characteristics associated with high vasectomy knowledge (≥3 accurate responses to four questions about vasectomy's effect on sexual functioning and method efficacy) and vasectomy interest, using chi-square tests and multivariable-adjusted Poisson regression. Of 620 men surveyed, 564 had complete data on the outcomes and covariates of interest. Overall, 51% of respondents demonstrated high vasectomy knowledge. Men who knew someone who had a vasectomy were more likely to have high knowledge (prevalence ratio [PR]: 1.50; 95% CI [1.22, 1.85]). One-third of the sample (35%) said they would consider getting a vasectomy. Men with high (vs. moderate/low) knowledge were more likely (PR: 1.36; 95% CI [1.04, 1.77]) to consider getting a vasectomy. Race/ethnicity, income level, and receiving the informational paragraph were not associated with vasectomy interest. Greater vasectomy knowledge affects men's interest in the procedure. Given that many U.S. men lack accurate knowledge, efforts are needed to address misinformation and increase awareness about vasectomy to ensure men have the information they need to meet or contribute to reproductive goals.
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Vasectomia , Criança , Etnicidade , Serviços de Planejamento Familiar , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Homens , Inquéritos e QuestionáriosRESUMO
The United States has abysmal reproductive health indices that, in part, reflect stark inequities experienced by people of color and those with preexisting medical conditions. The growth of "femtech," or technology-based solutions to women's health issues, in the public and private sectors is promising, yet these solutions are often geared toward health-literate, socioeconomically privileged, and/or relatively healthy white cis-women. In this viewpoint, we propose a set of guiding principles for building technologies that proactively identify and address these critical gaps in health care for people from socially and economically marginalized populations that are capable of pregnancy, as well as people with serious chronic medical conditions. These guiding principles require that such technologies: (1) include community stakeholders in the design, development, and deployment of the technology; (2) are grounded in person-centered frameworks; and (3) address health disparities as a strategy to advance health equity and improve health outcomes.
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Equidade em Saúde , Saúde Reprodutiva , Doença Crônica , Atenção à Saúde , Feminino , Humanos , Estados UnidosRESUMO
RATIONALE: Women with epilepsy (WWE) have unique disease-specific considerations regarding their sexual and reproductive health (SRH), which impact decision-making around pregnancy and contraception. Understanding their perspectives, preferences, and experiences regarding SRH care contributes to optimizing patient-centered clinical practice. METHODS: We conducted individual semi-structured interviews with WWE aged 18-45â¯years, exploring their SRH care experiences and preferences. We audio-recorded and transcribed all interviews. Two coders used both inductive and deductive strategies to perform thematic analysis and identify key themes and representative quotes. RESULTS: Twenty WWE completed interviews (median age 23â¯years; range 18-43â¯years). Key themes included: 1) SRH counseling from neurologists often did not occur, was limited in scope, or contained misinformation, especially during adolescence and early adulthood. In particular, participants felt that they received poor counseling about contraception, fertility, folic acid, and teratogenic medications, which impacted their reproductive decision-making. 2) WWE report fragmented care between their neurologist and other SRH providers. 3) WWE prefer that their neurologists initiate routine comprehensive discussions about SRH. 4) Conversations about SRH should begin in adolescence and include private confidential discussions between neurologists and WWE. 5) Successful SRH conversations between neurologists and WWE involve detailed information, reassurance, and support for the patient's reproductive goals. CONCLUSION: WWE desire comprehensive, coordinated counseling and care regarding SRH and epilepsy, and often experience suboptimal SRH care. Better understanding of the SRH needs, preferences, and experiences of WWE will help inform interventions to optimize patient-centered SRH counseling and care by healthcare professionals, especially during adolescence.