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1.
CA Cancer J Clin ; 2024 Jun 19.
Artigo em Inglês | MEDLINE | ID: mdl-38896503

RESUMO

Social media is widely used globally by patients, families of patients, health professionals, scientists, and other stakeholders who seek and share information related to cancer. Despite many benefits of social media for cancer care and research, there is also a substantial risk of exposure to misinformation, or inaccurate information about cancer. Types of misinformation vary from inaccurate information about cancer risk factors or unproven treatment options to conspiracy theories and public relations articles or advertisements appearing as reliable medical content. Many characteristics of social media networks-such as their extensive use and the relative ease it allows to share information quickly-facilitate the spread of misinformation. Research shows that inaccurate and misleading health-related posts on social media often get more views and engagement (e.g., likes, shares) from users compared with accurate information. Exposure to misinformation can have downstream implications for health-related attitudes and behaviors. However, combatting misinformation is a complex process that requires engagement from media platforms, scientific and health experts, governmental organizations, and the general public. Cancer experts, for example, should actively combat misinformation in real time and should disseminate evidence-based content on social media. Health professionals should give information prescriptions to patients and families and support health literacy. Patients and families should vet the quality of cancer information before acting upon it (e.g., by using publicly available checklists) and seek recommended resources from health care providers and trusted organizations. Future multidisciplinary research is needed to identify optimal ways of building resilience and combating misinformation across social media.

2.
Am J Hum Genet ; 109(12): 2141-2151, 2022 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-36417915

RESUMO

As genomic and personalized medicine becomes mainstream, assessing and understanding the public's genetic literacy is paramount. Because genetic research drives innovation and involves much of the public, it is equally important to assess its impact on genetic literacy. We designed a survey to assess genetic literacy in three ways (familiarity, knowledge, and skills) and distributed it to two distinct samples: 2,050 members of the general population and 2,023 individuals currently enrolled in a large-scale genetic research study. We compared these data to a similar survey implemented in 2013. The results indicate that familiarity with basic genetic terms in 2021 (M = 5.36 [range 1-7], p < 0.001) and knowledge of genetic concepts in 2021 (M = 9.06 [56.6% correct], p = 0.002) are significantly higher compared to 2013 (familiarity: M = 5.08 [range 1-7]; knowledge: M = 8.72 [54.5% correct]). Those currently enrolled in a genetic study were also significantly more familiar with genetic terms (M = 5.79 [range 1-7], p < 0.001) and more knowledgeable of genetic concepts (M = 10.57 [66.1% correct], p < 0.001), and they scored higher in skills (M = 3.57 [59.5% correct], p < 0.001) than the general population (M = 5.36 [range 1-7]; M = 9.06 [56.6% correct]; M = 2.65 [44.2% correct]). The results suggest that genetic literacy is improving over time, with room for improvement. We conclude that educational interventions are needed to ensure familiarity with and comprehension of basic genetic concepts and suggest further exploration of the impact of genetic research participation on genetic literacy to determine mechanisms for potential interventions.


Assuntos
Pesquisa em Genética , Alfabetização , Humanos , Genômica , Medicina de Precisão
3.
J Virol ; 98(6): e0082524, 2024 Jun 13.
Artigo em Inglês | MEDLINE | ID: mdl-38809027

RESUMO

The coronavirus disease 2019 (COVID-19) pandemic has highlighted the importance of health literacy and trust in pandemic management. Collaborating with the community to prepare for pandemics is incredibly effective in fostering understanding and building trust in public health and scientific research.


Assuntos
COVID-19 , Letramento em Saúde , Saúde Pública , Confiança , Humanos , COVID-19/epidemiologia , COVID-19/prevenção & controle , Pandemias/prevenção & controle
4.
J Allergy Clin Immunol ; 153(5): 1241-1251, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38135010

RESUMO

The US Department of Health and Human Services has defined health literacy (HL) as the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. Structural and social determinants of health lead to low HL in approximately 36% of adults in the United States, where this condition is most prevalent in racial and ethnic minorities, economically disadvantaged communities, and immigrants with limited English proficiency. In turn, low HL can worsen asthma outcomes through direct effects (eg, nonadherence to or incorrect use of medications) and indirect effects (eg, an unhealthy diet leading to obesity, a risk factor for asthma morbidity). The purpose of this update is to examine evidence from studies on low HL and health and asthma outcomes published in the last 12 years, identify approaches to improve HL and reduce health disparities in asthma, and discuss future directions for research in this area under the conceptual framework of a socioecological model that illustrates the multifactorial and interconnected complexity of this public health issue at different levels.


Assuntos
Asma , Letramento em Saúde , Humanos , Asma/epidemiologia , Estados Unidos/epidemiologia
5.
J Allergy Clin Immunol ; 153(2): 368-377, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37967769

RESUMO

Allergic and immunologic conditions, including asthma, food allergy, atopic dermatitis, and allergic rhinitis, are among the most common chronic conditions in children and adolescents that often last into adulthood. Although rare, inborn errors of immunity are life-altering and potentially fatal if unrecognized or untreated. Thus, allergic and immunologic conditions are both medical and public health issues that are profoundly affected by socioeconomic factors. Recently, studies have highlighted societal issues to evaluate factors at multiple levels that contribute to health inequities and the potential steps toward closing those gaps. Socioeconomic disparities can influence all aspects of care, including health care access and quality, diagnosis, management, education, and disease prevalence and outcomes. Ongoing research, engagement, and deliberate investment of resources by relevant stakeholders and advocacy approaches are needed to identify and address the impact of socioeconomics on health care disparities and outcomes among patients with allergic and immunologic diseases.


Assuntos
Asma , Dermatite Atópica , Hipersensibilidade Alimentar , Rinite Alérgica , Humanos , Criança , Adolescente , Dermatite Atópica/epidemiologia , Dermatite Atópica/terapia , Asma/epidemiologia , Asma/terapia , Rinite Alérgica/epidemiologia , Hipersensibilidade Alimentar/epidemiologia , Fatores Socioeconômicos
6.
Am J Med Genet C Semin Med Genet ; 196(1): e32074, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37946659

RESUMO

Patients with Down syndrome have significant specialized health care needs. Our objective was to understand the needs, satisfaction, and online habits of caregivers as they care for persons with Down syndrome. A mixed-method survey was distributed through REDCap from April 2022 to June 2022 in the United States; a Spanish-translated version was distributed through SurveyMonkey from August 2022 to March 2023 in Mexico. We received 290 completed responses from the United States and 58 from caregivers in Mexico. We found that current health care options are not meeting the needs of many individuals with DS in both the United States (39.7%) and Mexico (46.6%). Caregivers expressed frustrations with the inaccessibility and inapplicability of health care information. In particular, they often found the volume of information overwhelming, given their limited medical background. Additionally, health care recommendations were not customized and lacked practical recommendations. Most caregivers in both the United States (72.1%) and Mexico (82.8%) believe it is not easy to find answers to medical questions about their loved ones with DS. Online platforms with customized, specific health information related to DS could offer innovative solutions to these unmet needs for families and primary care providers.


Assuntos
Cuidadores , Síndrome de Down , Humanos , Estados Unidos , Alfabetização , Atenção à Saúde , Satisfação Pessoal
7.
Cancer ; 2024 Jul 17.
Artigo em Inglês | MEDLINE | ID: mdl-39017818

RESUMO

BACKGROUND: This study examines patients' understanding of health insurance terms and concepts and quantifies health insurance literacy (HIL) levels by key sociodemographic factors. METHODS: This study included 393 adult patients with cancer (>18 years old) receiving treatment in two ambulatory infusion centers: Mayo Clinic in Phoenix, Arizona and the University of Mississippi Medical Center in Jackson, Mississippi. Respondents' perceptions of their HIL were assessed using the Health Insurance Literacy Measure (HILM), a validated 21-item measure of a consumer's ability to select and use health insurance (HIL self-efficacy). Respondents' knowledge of health insurance concepts (HIL knowledge) was measured using 10 items created by the Kaiser Family Foundation. The number of correct answers was categorized into three levels: 0-4 (low knowledge), 5-6 (moderate knowledge), and 7-10 (high knowledge). Multivariable logistic regressions were used to compare correct answers to HIL knowledge questions by HIL self-efficacy. RESULTS: Nearly three-quarters of patients had high HIL self-efficacy and high HIL knowledge (70.5%), understanding basic insurance terms, such as premiums and deductibles. Relatively low percentages of patients correctly answered questions about the meaning of provider networks, health insurance formularies, and calculating out-of-pocket spending in scenarios when insurers pay a portion of allowed charges. Lower HIL knowledge was more common among patients with less educational attainment (

8.
Cancer Causes Control ; 35(2): 203-214, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37679534

RESUMO

PURPOSE: We aimed to assess whether nativity differences in socioeconomic (SES) barriers and health literacy were associated with healthcare delays among US cancer survivors. METHODS: "All of Us" survey data were analyzed among adult participants ever diagnosed with cancer. A binary measure of healthcare delay (1+ delays versus no delays) was created. Health literacy was assessed using the Brief Health Literacy Screen. A composite measure of SES barriers (education, employment, housing, income, and insurance statuses) was created as 0, 1, 2, or 3+. Multivariable logistic regression model tested the associations of (1) SES barriers and health literacy with healthcare delays, and (2) whether nativity modified this relationship. RESULTS: Median participant age was 64 years (n = 10,020), with 8% foreign-born and 18% ethnic minorities. Compared to survivors with no SES barriers, those with 3+ had higher likelihood of experiencing healthcare delays (OR 2.18, 95% CI 1.84, 2.58). For every additional barrier, the odds of healthcare delays were greater among foreign-born (1.72, 1.43, 2.08) than US-born (1.27, 1.21, 1.34). For every 1-unit increase in health literacy among US-born, the odds of healthcare delay decreased by 9% (0.91, 0.89, 0.94). CONCLUSION: We found that SES barriers to healthcare delays have a greater impact among foreign-born than US-born cancer survivors. Higher health literacy may mitigate healthcare delays among US cancer survivors. Healthcare providers, systems and policymakers should assess and address social determinants of health and promote health literacy as a way to minimize healthcare delays among both foreign- and US-born cancer survivors.


Assuntos
Sobreviventes de Câncer , Neoplasias , Saúde da População , Adulto , Humanos , Pessoa de Meia-Idade , Promoção da Saúde , Escolaridade , Atenção à Saúde , Neoplasias/epidemiologia
9.
Artigo em Inglês | MEDLINE | ID: mdl-38951386

RESUMO

OBJECTIVE: Understand if cancer fatalism among adult social media users in the United States is linked to social media informational awareness and if the relationship varies by education level. METHODS: Cross-sectional data from the 2022 Health Information National Trends Survey (n = 3,948) were analyzed using multivariable linear probability models. The study population was defined as social media users active within the past year. The outcome variable was cancer fatalism and the predictor variables were social media informational awareness and education level. RESULTS: Participants with low social media informational awareness were 9% (95% CI = 3, 15), 6% (95% CI = 1, 11), and 21% (95% CI = 14, 27) percentage points more likely to agree that it seems like everything causes cancer, you cannot lower your chances of getting cancer, and there are too many cancer prevention recommendations to follow, respectively. Participants with a college degree or higher level of education and who reported high social media informational awareness were the least likely to agree that everything causes cancer (60%; 95% CI = 54, 66), you cannot lower your chances of getting cancer (14%; 95% CI = 10, 19), and there are too many cancer prevention recommendations to follow (52%; 95% CI = 46, 59). CONCLUSION: Social media informational awareness was associated with lower levels of cancer fatalism among adult social media users. College graduates with high social media informational awareness were the least likely to report cancer fatalism.

10.
J Med Virol ; 96(7): e29795, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-39007429

RESUMO

Despite increased risk of severe acute respiratory syndrome coronavirus 2 infections and higher rates of COVID-19-related complications, racialized and Indigenous communities in Canada have lower immunization uptake compared to White individuals. However, there is woeful lack of data on predictors of COVID-19 vaccine mistrust (VM) that accounts for diverse social and cultural contexts within specific racialized and Indigenous communities. Therefore, we sought to characterize COVID-19 VM among Arab, Asian, Black, and Indigenous communities in Canada. An online survey was administered to a nationally representative, ethnically diverse panel of participants in October 2023. Arabic, Asian, Indigenous, and Black respondents were enriched in the sampling panel. Data were collected on demographics, COVID-19 VM, experience of racial discrimination, health literacy, and conspiracy beliefs. We used descriptive and regression analyses to determine the extent and predictors of COVID-19 VM among racialized and Indigenous individuals. All racialized respondents had higher VM score compared to White participants. Among 4220 respondents, we observed highest VM among Black individuals (12.18; ±4.24), followed by Arabic (12.12; ±4.60), Indigenous (11.84; ±5.18), Asian (10.61; ±4.28), and White (9.58; ±5.00) participants. In the hierarchical linear regression analyses, Black participants, women, everyday racial discrimination, and major experience of discrimination were positively associated with COVID-19 VM. Effects of racial discrimination were mediated by addition of conspiracy beliefs to the model. Racialized and Indigenous communities experience varying levels of COVID-19 VM and carry specific predictors and mediators to development of VM. This underscores the intricate interaction between race, gender, discrimination, and VM that need to be considered in future vaccination campaigns.


Assuntos
Árabes , Vacinas contra COVID-19 , COVID-19 , Letramento em Saúde , Povos Indígenas , Racismo , Humanos , Feminino , Masculino , Adulto , COVID-19/prevenção & controle , COVID-19/etnologia , Canadá/epidemiologia , Vacinas contra COVID-19/administração & dosagem , Pessoa de Meia-Idade , Povos Indígenas/estatística & dados numéricos , Confiança , Adulto Jovem , Inquéritos e Questionários , Conhecimentos, Atitudes e Prática em Saúde , Idoso , Povo Asiático , População Negra/estatística & dados numéricos , População Negra/psicologia , SARS-CoV-2/imunologia , Vacinação/psicologia , Vacinação/estatística & dados numéricos , Adolescente , Etnicidade
11.
J Med Virol ; 96(2): e29467, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38348886

RESUMO

Factors influencing vaccine uptake in Black individuals remain insufficiently documented. Understanding the role of COVID-19 related stress, conspiracy theories, health literacy, racial discrimination experiences, and confidence in health authorities can inform programs to increase vaccination coverage. We sought to analyze these factors and vaccine uptake among Black individuals in Canada. A representative sample of 2002 Black individuals from Ontario, Quebec, Alberta, Nova Scotia, New Brunswick, British Columbia, and Manitoba, aged 14 years or older completed questionnaires assessing vaccine uptake, health literacy, conspiracy theories, racial discrimination experiences, COVID-19-related stress, and confidence in health authorities. Mediation analyses were conducted to assess (1) the effect of health literacy on COVID-19 vaccination uptake through confidence and need, COVID-19 related traumatic stress, and racial discrimination, and (2) the effect of conspiracy beliefs on COVID-19 vaccination uptake through the same factors. Overall, 69.57% (95% confidence interval, 67.55%-71.59%) of the participants were vaccinated and 83.48% of them received two or more doses. Those aged 55 years and older were less likely to be vaccinated, as well as those residing in British Columbia and Manitoba. Mediation models showed that the association between health literacy and COVID-19 vaccine uptake was mediated by confidence in health authorities (B = 0.02, p < 0.001), COVID-19-related stress (B = -0.02, p < 0.001), and racial discrimination (B = -0.01, p = 0.032), but both direct and total effects were nonsignificant. Lastly, conspiracy beliefs were found to have a partial mediation effect through the same mediators (B = 0.02, p < 0.001, B = -0.02, p < 0.001, B = -0.01, p = 0.011, respectively). These findings highlight the need for targeted interventions to address vaccine hesitancy and inform approaches to improve access to vaccinations among Black communities.


Assuntos
COVID-19 , Letramento em Saúde , Racismo , Humanos , Vacinas contra COVID-19 , COVID-19/epidemiologia , COVID-19/prevenção & controle , Canadá , Vacinação
12.
Ann Surg Oncol ; 31(9): 5911-5918, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-38862836

RESUMO

INTRODUCTION: A significant proportion of breast cancer cases are hereditary and are potentially preventable. However, adoption of the preventive measures remains a significant challenge, particularly because of to lack of knowledge and awareness in low- to middle-income countries. METHODS: This prospective study conducted at a high-volume tertiary care cancer center in North India to assess the knowledge, awareness, and attitudes of female breast cancer patients and impact of a brief educational intervention. The study involved three phases: pre-interventional assessment, educational intervention, and post-interventional assessment utilizing a structured questionnaire. RESULTS: The study involved 300 newly diagnosed breast cancer patients; 16.7% were familial. At the outset, 87.0% patients had low knowledge of risk factors, 90.3% about screening, and 32.7% about treatment. Awareness levels were low: 13.7% aware of familial risk and 2.7% of breast cancer genes. Affordability of genetic testing was low (15.2%), and interest in testing for self and family members was limited (32.0% and 26.3%). Following educational intervention, a significant positive percentage change was noticed in knowledge (risk factors: 12.8%, screening: 36.2%, treatment: 82%), awareness (familial risk: 66.7%, BRCA gene: 12.3%), and attitude (testing for self: 17.8%, family: 19.5%). CONCLUSIONS: This study highlights the significant knowledge gaps among breast cancer patients regarding genetics. The educational intervention led to notable improvements in knowledge, awareness, and attitudes, underscoring the importance of tailored patient education in breast cancer care.


Assuntos
Neoplasias da Mama , Testes Genéticos , Conhecimentos, Atitudes e Prática em Saúde , Letramento em Saúde , Educação de Pacientes como Assunto , Humanos , Feminino , Neoplasias da Mama/genética , Estudos Prospectivos , Inquéritos e Questionários , Adulto , Pessoa de Meia-Idade , Índia , Educação de Pacientes como Assunto/métodos , Predisposição Genética para Doença , Seguimentos , Prognóstico , Fatores de Risco , Países em Desenvolvimento , Idoso , Adulto Jovem
13.
Clin Endocrinol (Oxf) ; 101(2): 121-129, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38979902

RESUMO

OBJECTIVE: Structured transition of adolescents and young adults with a chronic endocrine disease from paediatric to adult care is important. Until now, no data on time and resources required for the necessary components of the transition process and the associated costs are available. DESIGN, PATIENTS AND MEASUREMENTS: In a prospective cohort study of 147 patients with chronic endocrinopathies, for the key elements of a structured transition pathway including (i) assessment of patients' disease-related knowledge and needs, (ii) required education and counselling sessions, (iii) compiling an epicrisis and a transfer appointment of the patient together with the current paediatric and the future adult endocrinologist resource consumption and costs were determined. RESULTS: One hundred and forty-three of 147 enroled patients (97.3%) completed the transition pathway and were transferred to adult care. The mean time from the decision to start the transition process to the final transfer consultation was 399 ± 159 days. Transfer consultations were performed in 143 patients, including 128 patients jointly with the future adult endocrinologist. Most consultations were performed by a multidisciplinary team consisting of a paediatric and adult endocrinologist, psychologist, nurse, and a social worker acting also as a case manager with a median of three team members and lasted 87.6 ± 23.7 min. The mean cumulative costs per patient of all key elements were 519 ± 206 Euros. In addition, costs for case management through the transition process were 104.8 ± 28.0 Euros. CONCLUSIONS: Using chronic endocrine diseases as an example, it shows how to calculate the time and cost of a structured transition pathway from paediatric to adult care, which can serve as a starting point for sustainable funding for other chronic rare diseases.


Assuntos
Doenças do Sistema Endócrino , Transição para Assistência do Adulto , Humanos , Adolescente , Doenças do Sistema Endócrino/terapia , Doenças do Sistema Endócrino/economia , Transição para Assistência do Adulto/economia , Masculino , Feminino , Adulto Jovem , Adulto , Estudos Prospectivos , Doença Crônica/economia , Criança , Custos de Cuidados de Saúde
14.
J Gen Intern Med ; 39(4): 573-577, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37940756

RESUMO

BACKGROUND: Most health information does not meet the health literacy needs of our communities. Writing health information in plain language is time-consuming but the release of tools like ChatGPT may make it easier to produce reliable plain language health information. OBJECTIVE: To investigate the capacity for ChatGPT to produce plain language versions of health texts. DESIGN: Observational study of 26 health texts from reputable websites. METHODS: ChatGPT was prompted to 'rewrite the text for people with low literacy'. Researchers captured three revised versions of each original text. MAIN MEASURES: Objective health literacy assessment, including Simple Measure of Gobbledygook (SMOG), proportion of the text that contains complex language (%), number of instances of passive voice and subjective ratings of key messages retained (%). KEY RESULTS: On average, original texts were written at grade 12.8 (SD = 2.2) and revised to grade 11.0 (SD = 1.2), p < 0.001. Original texts were on average 22.8% complex (SD = 7.5%) compared to 14.4% (SD = 5.6%) in revised texts, p < 0.001. Original texts had on average 4.7 instances (SD = 3.2) of passive text compared to 1.7 (SD = 1.2) in revised texts, p < 0.001. On average 80% of key messages were retained (SD = 15.0). The more complex original texts showed more improvements than less complex original texts. For example, when original texts were ≥ grade 13, revised versions improved by an average 3.3 grades (SD = 2.2), p < 0.001. Simpler original texts (< grade 11) improved by an average 0.5 grades (SD = 1.4), p < 0.001. CONCLUSIONS: This study used multiple objective assessments of health literacy to demonstrate that ChatGPT can simplify health information while retaining most key messages. However, the revised texts typically did not meet health literacy targets for grade reading score, and improvements were marginal for texts that were already relatively simple.


Assuntos
Letramento em Saúde , Humanos , Compreensão , Idioma , Leitura
15.
BMC Cancer ; 24(1): 695, 2024 Jun 06.
Artigo em Inglês | MEDLINE | ID: mdl-38844917

RESUMO

BACKGROUND: Cervical cancer (CxCa), although preventable, is still among the most prevalent cancers in women. Mortality from this cancer is high, especially in low-income countries where preventive strategies are often lacking. We studied the knowledge, attitudes, and practices regarding CxCa among Yemeni women. METHODS: This cross-sectional study was conducted in 2019 among 399 women in five major hospitals in Sanaa, the capital city of Yemen. Data were collected through face-to-face interviews using structured questionnaires. We used logistic regression models to analyze the likelihood of hearing about CxCa, believing that CxCa is treatable and preventable, awareness of the Pap smear test, and ever having this test, in relation to participant's age, education level, working outside the household, and family history of CxCa. RESULTS: Only 66.7% of the women had heard of CxCa. Women with higher education, working outside the household, and with a family history of CxCa were more likely to be aware of CxCa. Working outside the household was the only variable related to a higher likelihood of knowing that CxCa is a treatable and preventable. Furthermore, women with a family history of CxCa were more likely to have knowledge about Pap smear test and were more likely to have Pap smear test in the past. CONCLUSION: This study identified a low awareness of CxCa and its prevention among Yemeni women. In order to reduce the burden of CxCa in Yemen and save women's lives, it is necessary to raise women's awareness of this disease, especially among those with lower education and those not involved in work outside their homes.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Neoplasias do Colo do Útero , Humanos , Feminino , Neoplasias do Colo do Útero/psicologia , Neoplasias do Colo do Útero/prevenção & controle , Neoplasias do Colo do Útero/epidemiologia , Iêmen/epidemiologia , Estudos Transversais , Adulto , Pessoa de Meia-Idade , Teste de Papanicolaou , Adulto Jovem , Inquéritos e Questionários , Esfregaço Vaginal/psicologia , Idoso
16.
BMC Cancer ; 24(1): 412, 2024 Apr 02.
Artigo em Inglês | MEDLINE | ID: mdl-38566032

RESUMO

BACKGROUND: Tumor genomic profiling (TGP) identifies targets for precision cancer treatments, but also secondary hereditary risks. Oncologists are poorly trained to communicate the results of TGP, especially among patients with lower health literacy, poorer genetics knowledge, and higher mistrust. African American (AA) patients are especially vulnerable to poor understanding due to significant cancer disparities and lower uptake of TGP. The goal of this research is to inform the development of an internet-based brief educational support for oncologists to prepare them to provide better decisional support related to TGP for their AA cancer patients. METHODS: This mixed-methods study used semi-structured interviews of oncologists to inform development of an online survey with a convenience sample of US-based oncologists (n = 50) to assess perceptions of the challenges of TGP and communicating results to AA patients. RESULTS: Most interviewed oncologists felt it was important to consider racial/cultural differences when communicating about hereditary risks. Cost, family dynamics, discrimination concerns, and medical mistrust were identified as particularly salient. Survey respondents' views related to AAs and perceptions of TGP were strongly associated with years since completing training, with recent graduates expressing stronger agreement with statements identifying barriers/disadvantages to TGP for AA patients. CONCLUSIONS: Oncologists who had more recently completed training expressed more negative perceptions of TGP and more perceived challenges in communicating about TGP with their AA patients. Focused training for oncologists that addresses barriers specific to AAs may be helpful in supporting improved communication about TGP and improved decisional support for AA patients with cancer considering TGP to evaluate their tumors.


Assuntos
Neoplasias , Humanos , Negro ou Afro-Americano/genética , Genômica , Neoplasias/genética , Oncologistas , Confiança , Fatores de Risco , Comunicação , Relações Médico-Paciente
17.
Hum Genomics ; 17(1): 63, 2023 Jul 15.
Artigo em Inglês | MEDLINE | ID: mdl-37454085

RESUMO

INTRODUCTION: The adoption and implementation of genomic medicine and pharmacogenomics (PGx) in healthcare systems have been very slow and limited worldwide. Major barriers to knowledge translation into clinical practice lie in the level of literacy of the public of genetics and genomics. The aim of this study was to assess the knowledge, attitudes, and perceptions of the United Arab Emirates (UAE) multi-ethnic communities toward genomic medicine and genetic testing. METHOD: A cross-sectional study using validated questionnaires was distributed to the participants. Descriptive statistics were performed, and multivariable logistic regression models were used to identify factors associated with knowledge of genomics. RESULTS: 757 individuals completed the survey. Only 7% of the participants had a good knowledge level in genetics and genomics (95% CI 5.3-9.0%). However, 76.9% of the participants were willing to take a genetic test if their relatives had a genetic disease. In addition, the majority indicated that they would disclose their genetic test results to their spouses (61.5%) and siblings (53.4%). CONCLUSIONS: This study sets the stage for the stakeholders to plan health promotion and educational campaigns to improve the genomic literacy of the community of the UAE as part of their efforts for implementing precision and personalized medicine in the country.


Assuntos
Medicina Genômica , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Emirados Árabes Unidos/epidemiologia , Estudos Transversais , Inquéritos e Questionários
18.
Lupus ; : 9612033241258189, 2024 Jun 03.
Artigo em Inglês | MEDLINE | ID: mdl-38830236

RESUMO

OBJECTIVE: Little is known about health literacy in childhood-onset systemic lupus erythematosus (cSLE) and how health literacy relates to medication adherence and psychosocial outcomes in this high-risk population. The objective of this study was to evaluate health literacy in adolescents and young adults with cSLE and its association with medication adherence and quality of life. METHODS: Youth 10-24 years with cSLE (n = 48) completed the Brief Healthy Literacy Screen (BHLS) and the Newest Vital Sign (NVS) to assess health literacy. Participants also completed validated measures of medication adherence and quality of life. Descriptive analyses were used to determine levels of health literacy. Bivariate correlations were used to evaluate associations between measures of health literacy with adherence and quality of life. A multivariable regression analyses was used to determine if health literacy was a significant predictor of adherence or quality of life, after adjusting for age, sex, race, and household income. RESULTS: Inadequate health literacy was common in this population, with 67% of youth categorized as having inadequate health literacy by the BHLS and 42% by the NVS. Higher medication adherence was associated with a higher BHLS score (r=.36, p = .017). BHLS was also significantly associated with better quality of life (r = 0.31, p = .034). CONCLUSION: Inadequate health literacy is prevalent among youth with cSLE. Higher health literacy is associated with higher medication adherence and better quality of life, suggesting that attention to health literacy could improve outcomes for this vulnerable population.

19.
J Sex Med ; 21(8): 676-682, 2024 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-38842265

RESUMO

BACKGROUND: Although sexual life and its knowledge are still taboo in many cultures, especially for women, it can negatively affect women's sexual health. AIM: The aim of this study was to examine the relationship between the frequency and duration of masturbation and the sexual health literacy among young Muslim women of reproductive age between 18 and 25 years living in western Turkey. METHODS: The cross-sectional descriptive study was conducted with 921 young women in western Turkey between March and December 2023. Participants were included in the study per the snowball method. The data consisted of attitudes, beliefs, and behaviors regarding masturbation, sexual life, and sexual health literacy. Data were obtained on an online platform and analyzed with SPSS (version 24; IBM). Difference, correlation, and regression analyses were performed. The significance level for statistical analyses was accepted as P < .05. OUTCOMES: The outcomes of the study are the attitudes, beliefs, and behaviors regarding masturbation, orgasm, sexual health literacy, and sexual function in women. RESULTS: The participants were young Muslim women aged 21.00 ± 1.89 years (mean ± SD). The frequency of masturbation was 5.06 ± 2.03 times per month, and the duration was 3.47 ± 1.77 minutes per day. Masturbation frequency and duration were significantly associated with sexual health literacy and sexual function (P < .001). According to regression analysis, sexual function increased and sexual health literacy increased as masturbation frequency and duration increased (P < .001). CLINICAL IMPLICATIONS: This study presents results on the current situation regarding the sexual health literacy and sexual lives in women from different geographies and cultures, and it serves as a source for future studies on areas that need to be improved. STRENGTHS AND LIMITATIONS: The limitation of the study is that it was conducted only with Muslim and Turkish women who use smartphones and are sexually active, so it cannot be generalized to all women. The strengths of the study are that it was conducted with a sample of 921 women, it was based on self-report and addressed many dimensions related to masturbation and female sexuality, and the results were reached through exploratory analysis. CONCLUSION: The study found that the higher the duration and frequency of masturbation in young women, the better their sexual function and higher their sexual literacy.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Letramento em Saúde , Islamismo , Masturbação , Saúde Sexual , Humanos , Feminino , Turquia , Estudos Transversais , Letramento em Saúde/estatística & dados numéricos , Masturbação/psicologia , Adulto Jovem , Adulto , Adolescente , Comportamento Sexual/estatística & dados numéricos , Inquéritos e Questionários , Orgasmo , Fatores de Tempo
20.
World J Urol ; 42(1): 241, 2024 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-38632212

RESUMO

PURPOSE: The importance of health literacy (HL) and digital health literacy (e-HL) in promoting healthy behavior and informed decision making is becoming increasingly apparent. This study aimed to assess the effects of HL and e-HL on the quality of life (QoL) of men who underwent radical prostatectomy (RP) for localized prostate cancer. MATERIALS AND METHODS: This prospective observational study included 104 patients who underwent RP for localized prostate cancer. HL and e-HL were evaluated using the validated eHealth Literacy Scale and European Health Literacy Survey Questionnaire Short Form before RP. We evaluated patients' physical, psychological, social, and global QoL using the validated EORTC QLQ-C30 8 weeks after RP. The exclusion criterion was any difficulties in language and comprehension. We employed one-way ANOVA to compare continuous variables across groups in univariate analysis and used MANOVA for exploring relationships among multiple continuous variables and groups in the multivariate analysis. RESULTS: Multivariate analyses showed that poorer e-HL and HL were associated with being older (p = 0.019), having less education (p < 0.001), and not having access to the internet (p < 0.001). Logistic regression analysis revealed significant associations between improved e-HL (p = 0.043) and HL (p = 0.023), better global health status, and higher emotional functioning (p = 0.011). However, the symptom scales did not differ significantly between the e-HL and HL groups. CONCLUSION: Our study showed a positive association between self-reported HL/e-HL and QoL, marking the first report on the impact of HL/e-HL on the QoL in men who underwent RP for clinically localized prostate cancer.


Assuntos
Letramento em Saúde , Neoplasias da Próstata , Humanos , Masculino , Estudos de Coortes , Saúde Digital , Estudos Prospectivos , Prostatectomia , Neoplasias da Próstata/cirurgia , Qualidade de Vida , Inquéritos e Questionários
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