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PURPOSE: To determine the feasibility and acceptability of using a patient decision aid (DA) for women with elevated breast cancer risk who are considering MRI screening. METHODS: This pilot study employed a mixed methods design to develop, modify, and test an interactive DA. The DA was administered among a consecutive patient sample with an estimated Tyrer-Cuzick v.8 lifetime breast cancer risk of 20% or greater and without a pathologic genetic mutation. The decisional conflict scale was used to measure decisional conflict. Post-intervention provider and patient feedback evaluated shared decision-making, feasibility, and acceptability. RESULTS: Twenty-four patients participated, with a median age of 44 years. Prior to DA use, sixteen patients (67%) were unsure whether to add MRI to their screening, six patients elected MRI (25%), and two patients declined MRI (8%). Following DA use, thirteen of sixteen of the initially undecided participants (81%) established a preference, with eleven electing to add MRI screening. Of participants with an initial preference, all maintained the same decision following use of the DA. Prior to the DA, the median decisional conflict score among participants was 25% (range 0-60%) compared with 0% (range 0-25%) after the DA. Healthcare providers reported that the DA was useful and easily incorporated into clinical workflow. CONCLUSIONS: This pilot study shows that there may be a benefit to DA utilization in the high-risk breast cancer clinic to guide shared decision-making in establishing a screening preference. The findings warrant further research to test the use of the DA in a larger, multi-site trial.
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Neoplasias da Mama , Adulto , Feminino , Humanos , Neoplasias da Mama/genética , Tomada de Decisões , Técnicas de Apoio para a Decisão , Detecção Precoce de Câncer , Projetos Piloto , Pessoa de Meia-IdadeRESUMO
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".
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Epilepsia , Aceitação pelo Paciente de Cuidados de Saúde , Causalidade , Epilepsia/epidemiologia , Epilepsia/etiologia , Humanos , Estigma Social , Uganda/epidemiologiaRESUMO
OBJECTIVE: Epilepsy is the most common chronic neurological disorder in the world and imposes a large economic burden on global healthcare systems, especially in low-income settings and rural areas as is found in sub-Saharan Africa (SSA). Despite the high epilepsy prevalence, there are no systematic descriptions of healthcare provider (HCP) perceptions and needs in managing people with epilepsy (PWE) in Uganda. Identifying these perceptions and needs is crucial for understanding community priorities, thereby enhancing the development of culturally sensitive communications, interventions, and research approaches. METHODS: In this qualitative study, we used semistructured interview guides to conduct focus group discussions that explored the perspectives of 32 providers of epilepsy care from health facilities around Mbarara, Uganda. Our sample included nonspecialized general physicians (nâ¯=â¯3), medical residents (nâ¯=â¯8), medical clinical officers (nâ¯=â¯3), psychiatric clinical nurses (nâ¯=â¯6), medical nurses and nursing assistants (nâ¯=â¯9), and other providers (nâ¯=â¯3), who were loosely grouped into discussion groups based on level or type of training. Self-assessed proficiency ratings were also administered to gain a better understanding of participants' confidence in their training, preparedness, and capabilities regarding epilepsy care. Thematic analysis of the focus group transcripts was conducted to ascertain commonly occurring themes about perceptions and challenges in epilepsy care. RESULTS: Our analyses identified nine major themes that dominated the perspectives of the study participants: care management, medications, diagnostics, HCP training, human resources, location, patient education, social support, and community knowledge and beliefs. Proficiency ratings prioritized areas of confidence as knowledge related to referrals, psychosocial impacts, and seizure neurophysiology. Areas of need were revealed as knowledge of diagnostic tools and antiepileptic drug (AED) regimens. CONCLUSIONS: Our findings delineate the perspectives of providers caring for PWE, with consistent recognition of challenges centering around resource augmentation, infrastructure strengthening, and education. Participants emphasized the urgent need to augment these resources to address limitations in medication types and access, trained human resources, and diagnostic tools. They overwhelmingly recognized the need for infrastructure strengthening to address human, diagnostic, medicinal, and capital resource limitations that place undue burden on patients with epilepsy and physicians. Providers indicated a clear desire to learn more about different diagnostic tools and medical management practices, potentially through continuing education, specialized training, or more intentional in-school diagnostic preparation. They also advocated for the powerful influence of patient and family education and clearly articulated the need for community sensitization and support. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".
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Epilepsia , Pessoal de Saúde , Epilepsia/epidemiologia , Epilepsia/terapia , Grupos Focais , Humanos , Pesquisa Qualitativa , 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".
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Epilepsia , Aceitação pelo Paciente de Cuidados de Saúde , Atenção à Saúde , Epilepsia/epidemiologia , Epilepsia/terapia , Feminino , Humanos , Masculino , Estudos Prospectivos , Uganda/epidemiologiaRESUMO
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
Background: Vaginal cuff dehiscence (VCD) in the setting of acute infection is an uncommon but serious complication of total hysterectomy without clear guidelines for management. There is a need for further documentation of best practices around treatment, particularly when it comes to surgical drain utilization and placement. Case description: We present a case of a 68-year-old with primary peritoneal carcinoma who underwent a robot-assisted total laparoscopic hysterectomy as part of an interval debulking surgery and had a VCD. The cuff was repaired vaginally in the operating room with placement of a Malecot catheter for pelvic abscess drainage. Discussion: The literature is sparse in regard to clear guidelines for management of VCD. Surgical and expectant management approaches are dependent on patient stability, surgical experience, local practice norms, and evidence of intra-abdominal injury. Interventional radiology has become a primary source of drain placement in management of VCD and vaginal cuff abscess. Malecot drains are a low cost, and effective intervention for such management and an important resource for the gynecologic surgeon.
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Hypertension (HTN) is the leading modifiable cardiovascular disease (CVD) risk factor in low and middle-income countries, and accurate and accessible blood pressure (BP) measurement is essential for identifying persons at risk. Given the convenience and increased use of community BP screening programs in low-income settings, we compared community and clinic BP measurements for participants in the Haiti CVD Cohort Study to determine the concordance of these two measurements. Participants were recruited using multistage random sampling from March 2019 to August 2021. HTN was defined as systolic BP (SBP) ≥ 140mmHg, diastolic BP (DBP) ≥ 90mmHg or taking antihypertensives according to WHO guidelines. Factors associated with concordance versus discordance of community and clinic BP measurements were assessed with multivariable Poisson regressions. Among 2,123 participants, median age was 41 years and 62% were female. Pearson correlation coefficients for clinic versus community SBP and DBP were 0.78 and 0.77, respectively. Using community BP measurements, 36% of participants screened positive for HTN compared with 30% using clinic BPs. The majority of participants had concordant measurements of normotension (59%) or HTN (26%) across both settings, with 4% having isolated elevated clinic BP (≥140/90 in clinic with normal community BP) and 10% with isolated elevated community BP (≥140/90 in community with normal clinic BP). These results underscore community BP measurements as a feasible and accurate way to increase HTN screening and estimate HTN prevalence for vulnerable populations with barriers to clinic access.
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Cardiovascular disease is the leading cause of death in lower-income countries including Haiti. Environmental lead exposure is associated with high blood pressure and cardiovascular mortality in high-income countries but has not been systematically measured and evaluated as a potential modifiable cardiovascular risk factor in lower-income countries where 6.5 billion people reside. We hypothesized lead exposure is high in urban Haiti and associated with higher blood pressure levels. Blood lead levels were measured in 2504 participants ≥18 years enrolled in a longitudinal population-based cohort study in Port-au-Prince. Lead screening was conducted using LeadCare II (detection limit ≥3.3 µg/dL). Levels below detection were imputed by dividing the level of detection by â2. Associations between lead (quartiles) and systolic blood pressure and diastolic blood pressure were assessed, adjusting for age, sex, obesity, smoking, alcohol, physical activity, income, and antihypertensive medication use. The median age of participants was 40 years and 60.1% were female. The geometric mean blood lead level was 4.73µg/dL, 71.1% had a detectable lead level and 42.3% had a blood lead level ≥5 µg/dL. After multivariable adjustment, lead levels in quartile four (≥6.5 µg/dL) compared with quartile 1 (<3.4 µg/dL) were associated with 2.42 mm Hg (95% CI, 0.36-4.49) higher systolic blood pressure and 1.96 mm Hg (95% CI, 0.56-3.37) higher diastolic blood pressure. In conclusion, widespread environmental lead exposure is evident in urban Haiti, with higher lead levels associated with higher systolic and diastolic blood pressure. Lead is a current and potentially modifiable pollutant in lower-income countries that warrants urgent public health remediation. Registration: URL: https://www.clinicaltrials.gov; Unique identifier: NCT03892265.