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1.
Rev Assoc Med Bras (1992) ; 70(8): e20240261, 2024.
Article in English | MEDLINE | ID: mdl-39166675

ABSTRACT

OBJECTIVE: Obesity is associated with many types of cancers. Despite this, the participation of obese individuals in cancer screenings is limited. The aim of this study was to evaluate the cancer screening-related attitudes of obese patients. METHODS: The study included 185 obese patients who presented to the obesity center (OC) and 191 obese patients who presented to the family medicine outpatient clinic from October to December 2019. The participants in both groups were first asked whether or not they had ever undergone any cancer screening tests and then provided with relevant training. After 3 months, the participants were contacted again and their attitudes toward cancer screening tests were re-evaluated. RESULTS: Patients who followed in the OC were found to have higher awareness of and compliance with cancer screening tests than the obese patients admitted to the outpatient clinic. The factors of being female, being followed in the OC, and residing in an urban area were positively associated with participation in cancer screening tests. CONCLUSION: Monitoring obese patients in target-oriented facilities such as an OC increases the chance of success in the fight against obesity and related health problems.


Subject(s)
Early Detection of Cancer , Neoplasms , Obesity , Humans , Female , Obesity/complications , Male , Middle Aged , Turkey , Adult , Health Knowledge, Attitudes, Practice , Aged , Patient Participation/statistics & numerical data , Body Mass Index , Surveys and Questionnaires
2.
J Clin Epidemiol ; 173: 111423, 2024 Sep.
Article in English | MEDLINE | ID: mdl-38880435

ABSTRACT

BACKGROUND AND OBJECTIVE: Long COVID (LC) refers to persistent symptoms after acute COVID-19 infection, which may persist for months or years. LC affects millions of people globally, with substantial impacts on quality of life, employment, and social participation. Ensuring access to effective, patient-centered care for LC demands evidence, grounded in inclusive representation of those affected by the condition. Yet survey studies frequently under-represent people with the most disabling disease presentations and racially and socioeconomically marginalized groups. We aimed to describe a patient-engaged approach to developing a survey to inform public LC health care and to assess its implementation in terms of enabling participation by diverse LC patients in Brazil. METHODS: Survey development was iterative, achieved through an interdisciplinary collaboration among researchers including people living with LC, and grounded in 3 guiding principles: (1) evidence-based; (2) inclusive, intersectional, and patient-centered understanding of chronic illness and research participation; and (3) sensitivity to the context of health-care access. RESULTS: The product of our collaboration was a longitudinal survey using a questionnaire assessing: LC symptoms; their clinical and functional evolution; and impacts on quality of life, household income, health service access, utilization, and out-of-pocket expenses. We illustrate how we operationalized our 3 principles through survey content, instrument design, and administration. Six hundred fifty-one participants with diverse LC symptoms, demography, and socioeconomic status completed the survey. We successfully included participants experiencing disabling symptoms, Black and mixed race participants, and those with lower education and income. CONCLUSION: By centering patient experience, our novel, principles-based approach succeeded in promoting equity, diversity, and inclusion in LC survey research. These principles guiding patient-engaged collaboration have broad transferability. We encourage survey researchers working on chronic illness and in other contexts of marginalization and inequality to adopt them.


Subject(s)
COVID-19 , Humans , Brazil , Female , Male , Middle Aged , Adult , Post-Acute COVID-19 Syndrome , Surveys and Questionnaires , Health Services Accessibility/statistics & numerical data , SARS-CoV-2 , Patient Participation/statistics & numerical data , Health Equity , Longitudinal Studies , Aged , Health Services Needs and Demand , Quality of Life , Healthcare Disparities/statistics & numerical data , Diversity, Equity, Inclusion
3.
BMC Public Health ; 23(1): 2060, 2023 10 20.
Article in English | MEDLINE | ID: mdl-37864242

ABSTRACT

BACKGROUND: The National Institutes of Health has advocated for improved minority participation in clinical research, including clinical trials and observational epidemiologic studies since 1993. An understanding of Mexican Americans (MAs) participation in clinical research is important for tailoring recruitment strategies and enrollment techniques for MAs. However, contemporary data on MA participation in observational clinical stroke studies are rare. We examined differences between Mexican Americans (MAs) and non-Hispanic whites (NHWs) participation in a population-based stroke study. METHODS: We included 3,594 first ever stroke patients (57.7% MAs, 48.7% women, median [IQR] age 68 [58-79]) from the Brain Attack Surveillance in Corpus Christi Project, 2009-2020 in Texas, USA, who were approached and invited to participate in a structured baseline interview. We defined participation as completing a baseline interview by patient or proxy. We used log-binomial models adjusting for prespecified potential confounders to estimate prevalence ratios (PR) of participation comparing MAs with NHWs. We tested interactions of ethnicity with age or sex to examine potential effect modification in the ethnic differences in participation. We also included an interaction between year and ethnicity to examine ethnic-specific temporal trends in participation. RESULTS: Baseline participation was 77.0% in MAs and 64.2% in NHWs (Prevalence Ratio [PR] 1.20; 95% CI, 1.14-1.25). The ethnic difference remained after multivariable adjustment (1.17; 1.12-1.23), with no evidence of significant effect modification by age or sex (Pinteraction by age = 0.68, Pinteraction by sex = 0.83). Participation increased over time for both ethnic groups (Ptrend < 0.0001), but the differences in participation between MAs and NHWs remained significantly different throughout the 11-year time period. CONCLUSION: MAs were persistently more likely to participate in a population-based stroke study in a predominantly MA community despite limited outreach efforts towards MAs during study enrollment. This finding holds hope for future research studies to be inclusive of the MA population.


Subject(s)
Clinical Studies as Topic , Mexican Americans , Stroke , White , Aged , Female , Humans , Male , Ethnicity , Mexican Americans/statistics & numerical data , Risk Factors , Stroke/epidemiology , Stroke/ethnology , Texas/epidemiology , White/statistics & numerical data , White People , Clinical Studies as Topic/statistics & numerical data , Patient Selection , Middle Aged , Patient Participation/statistics & numerical data
4.
Gac Med Mex ; 157(2): 167-173, 2021.
Article in English | MEDLINE | ID: mdl-34270528

ABSTRACT

INTRODUCTION: Promoting breast cancer (BC) detection in women by means of mammography is a viable strategy to reduce the number of diagnoses at clinically advanced stages and mortality. OBJECTIVES: To describe the results reported by mammography studies in women, carried out nationally during 2013-2017, and to analyze the spatiotemporal trend of Breast Imaging Reporting and Data System (BIRADS) categories suggestive of malignancy by State. METHOD: Longitudinal, analytical design that included information on mammography studies of women according to age group (< 40 and ≥ 40), evaluated in units of the Ministry of Health of Mexico during 2013-2017. The frequency of BIRADS categories and a standardized rate suggestive of malignancy (categories 4 and 5) were estimated in women aged ≥ 40 years, and spatial statistics were used to analyze the trend by State. RESULTS: A total of 3,659,151 mammograms were analyzed, 98.5 % in women aged ≥ 40 years. The malignancy-suggestive rate decreased from 38.3 (2013) to 31 (2017) per 100,000 women aged ≥ 40 years; however, the risk of detection increased up to 13 times in ten States. CONCLUSIONS: Although the risk of detection in categories suggestive of malignancy decreased at the national level, some States need to reinforce the application of BC detection programs through mammography and increase the participation of the target population.


INTRODUCCIÓN: Promover la detección de cáncer de mama (CaMa) en mujeres mediante mastografía es una estrategia viable para disminuir los diagnósticos en fases clínicamente avanzadas y la mortalidad. OBJETIVOS: Describir los resultados reportados por estudios de mastografía en mujeres realizados a nivel nacional durante 2013-2017 y analizar la tendencia espaciotemporal de categorías BIRADS (Breast Imaging Reporting and Data System) sugestivas de malignidad por Estado. MÉTODO: Diseño analítico longitudinal que incluyó información sobre estudios de mastografía de mujeres según grupo de edad (< 40 e ≥ 40), valoradas en unidades de la Secretaría de Salud, México, durante 2013-2017. Se estimó la frecuencia de categorías según BIRADS, tasa estandarizada sugestiva de malignidad (categorías 4 y 5) en mujeres ≥ 40 años y se utilizó estadística espacial para analizar la tendencia por Estado. RESULTADOS: Se analizaron 3,659,151 mastografías, el 98.5 % en mujeres ≥ 40 años. La tasa sugestiva de malignidad disminuyó de 38.3 (2013) a 31 (2017) por 100 mil mujeres ≥ 40 años; sin embargo, el riesgo de detección aumentó hasta 13 veces en diez Estados. CONCLUSIONES: Aunque el riesgo de detección en categorías sugestivas de malignidad disminuyó a nivel nacional, algunos Estados requieren reforzar la aplicación de programas de detección del CaMa mediante mastografía e incrementar la participación de la población blanco.


Subject(s)
Breast Neoplasms/diagnostic imaging , Mammography/statistics & numerical data , Spatio-Temporal Analysis , Adult , Age Factors , Aged , Breast Neoplasms/classification , Breast Neoplasms/epidemiology , Female , Humans , Linear Models , Mammography/classification , Mexico/epidemiology , Middle Aged , Patient Participation/statistics & numerical data , Space-Time Clustering
5.
Viruses ; 13(4)2021 04 16.
Article in English | MEDLINE | ID: mdl-33923434

ABSTRACT

Despite great advances in our knowledge of the consequences of Zika virus to human health, many questions remain unanswered, and results are often inconsistent. The small sample size of individual studies has limited inference about the spectrum of congenital Zika manifestations and the prognosis of affected children. The Brazilian Zika Cohorts Consortium addresses these limitations by bringing together and harmonizing epidemiological data from a series of prospective cohort studies of pregnant women with rash and of children with microcephaly and/or other manifestations of congenital Zika. The objective is to estimate the absolute risk of congenital Zika manifestations and to characterize the full spectrum and natural history of the manifestations of congenital Zika in children with and without microcephaly. This protocol describes the assembly of the Consortium and protocol for the Individual Participant Data Meta-analyses (IPD Meta-analyses). The findings will address knowledge gaps and inform public policies related to Zika virus. The large harmonized dataset and joint analyses will facilitate more precise estimates of the absolute risk of congenital Zika manifestations among Zika virus-infected pregnancies and more complete descriptions of its full spectrum, including rare manifestations. It will enable sensitivity analyses using different definitions of exposure and outcomes, and the investigation of the sources of heterogeneity between studies and regions.


Subject(s)
Maternal Exposure/statistics & numerical data , Meta-Analysis as Topic , Patient Participation/statistics & numerical data , Pregnancy Complications, Infectious/virology , Zika Virus Infection/congenital , Brazil/epidemiology , Child, Preschool , Clinical Protocols , Female , Humans , Infant , Infant, Newborn , Microcephaly/epidemiology , Microcephaly/virology , Pregnancy , Prospective Studies , Zika Virus Infection/complications , Zika Virus Infection/epidemiology
6.
Gac. méd. Méx ; Gac. méd. Méx;157(2): 174-180, mar.-abr. 2021. tab, graf
Article in Spanish | LILACS | ID: biblio-1279098

ABSTRACT

Resumen Introducción: Promover la detección de cáncer de mama (CaMa) en mujeres mediante mastografía es una estrategia viable para disminuir los diagnósticos en fases clínicamente avanzadas y la mortalidad. Objetivos: Describir los resultados reportados por estudios de mastografía en mujeres realizados a nivel nacional durante 2013-2017 y analizar la tendencia espaciotemporal de categorías BIRADS (Breast Imaging Reporting and Data System) sugestivas de malignidad por Estado. Método: Diseño analítico longitudinal que incluyó información sobre estudios de mastografía de mujeres según grupo de edad (< 40 e ≥ 40), valoradas en unidades de la Secretaría de Salud, México, durante 2013-2017. Se estimó la frecuencia de categorías según BIRADS, tasa estandarizada sugestiva de malignidad (categorías 4 y 5) en mujeres ≥ 40 años y se utilizó estadística espacial para analizar la tendencia por Estado. Resultados: Se analizaron 3,659,151 mastografías, el 98.5 % en mujeres ≥ 40 años. La tasa sugestiva de malignidad disminuyó de 38.3 (2013) a 31 (2017) por 100 mil mujeres ≥ 40 años; sin embargo, el riesgo de detección aumentó hasta 13 veces en diez Estados. Conclusiones: Aunque el riesgo de detección en categorías sugestivas de malignidad disminuyó a nivel nacional, algunos Estados requieren reforzar la aplicación de programas de detección del CaMa mediante mastografía e incrementar la participación de la población blanco.


Abstract Introduction: Promoting breast cancer (BC) detection in women by means of mammography is a viable strategy to reduce the number of diagnoses at clinically advanced stages and mortality. Objectives: To describe the results reported by mammography studies in women, carried out nationally during 2013-2017, and to analyze the spatiotemporal trend of Breast Imaging Reporting and Data System (BIRADS) categories suggestive of malignancy by State. Method: Longitudinal, analytical design that included information on mammography studies of women according to age group (< 40 and ≥ 40), evaluated in units of the Ministry of Health of Mexico during 2013-2017. The frequency of BIRADS categories and a standardized rate suggestive of malignancy (categories 4 and 5) were estimated in women aged ≥ 40 years, and spatial statistics were used to analyze the trend by State. Results: A total of 3,659,151 mammograms were analyzed, 98.5 % in women aged ≥ 40 years. The malignancy-suggestive rate decreased from 38.3 (2013) to 31 (2017) per 100,000 women aged ≥ 40 years; however, the risk of detection increased up to 13 times in ten States. Conclusions: Although the risk of detection in categories suggestive of malignancy decreased at the national level, some States need to reinforce the application of BC detection programs through mammography and increase the participation of the target population.


Subject(s)
Humans , Female , Adult , Middle Aged , Aged , Breast Neoplasms/diagnostic imaging , Mammography/statistics & numerical data , Spatio-Temporal Analysis , Patient Participation/statistics & numerical data , Breast Neoplasms/classification , Breast Neoplasms/epidemiology , Mammography/classification , Linear Models , Space-Time Clustering , Age Factors , Mexico/epidemiology
7.
Nutr Hosp ; 38(4): 807-813, 2021 Jul 29.
Article in English | MEDLINE | ID: mdl-33703910

ABSTRACT

INTRODUCTION: Introduction: the Chilean Ministry of Health implements the Vida Sana (VS) program with the objective of reducing risk factors for chronic diseases in overweight/obese (OW/OB) individuals, aged 2-64. Objective: to determine the effectiveness of VS in OW/OB women (20-44 yrs) in terms of their engagement in the recommended activities. These consist of participating in a minimum number each of three core activities (psychologist consultations, lifestyle workshops, and physical activity sessions) during 6 months, to obtain a 5 % weight loss and improved physical fitness (PF). Methods: a retrospective study involving secondary analyses of the 2017 VS database (n = 5,179 OW/OB women). We determined effectiveness by: a) comparing changes in weight and PF in participants who achieved one or both outcomes, using t-tests and tests of proportions, and b) assessing the probability of achieving the program´s goal, according to participation in 1, 2, or 3 core activities, individually and jointly, using the OR (95 % CI) and trend analysis. Results: around 32 %, 88 %, and 29 % of women achieved 5 % weight loss, improved PF, and both, respectively. The high percentage of women who improved PF was due to a permissive criterion. Although 20 % of women attained the program´s goal with 0 engagement, among participants, the ORs (95 % CI) for achieving the program´s goal when engaging in 1, 2, or 3 core activities were 1.55 (CI 1.2-2.03), 2.34 (1.76-3.11), and 3.5 (2.21-5.53), respectively. Conclusion: effectiveness parallels degree of engagement in the recommended activities of VS. A characterization of a program´s participation rate is crucial for improving its effectiveness.


INTRODUCCIÓN: Introducción: el objetivo del programa chileno Vida Sana (VS) es reducir los factores de riesgo de enfermedades crónicas en personas de 2-64 años con sobrepeso/obesidad (SP/OB). Objetivo: determinar la efectividad del programa VS en mujeres SP/OB (20-44 años) a través de su participación en cada una de las actividades recomendadas (consultas con psicólogo, talleres y actividad física) durante 6 meses, para lograr perder un 5 % de peso y mejorar la condición física (CF). Métodos: estudio retrospectivo con análisis secundario de la base de datos VS de 2017 (n = 5179 mujeres SP/OB). Se determinó la efectividad: a) comparando los cambios en el peso y la CF de las participantes que lograron uno o ambos resultados, usando el test de la "t" y el de proporciones; b) evaluando la probabilidad de lograr el objetivo de acuerdo con la participación en 1, 2 o 3 actividades, de manera individual y conjunta, calculando los OR (IC 95 %) y el análisis de tendencias. Resultados: el 32 %, 88 % y 29 % de las mujeres perdieron un 5 % de peso, mejoraron la CF o consiguieron ambas cosas, respectivamente. El alto porcentaje que mejoró la CF se debió a un criterio permisivo. Aunque el 20 % de las mujeres lograron el objetivo del programa con una participación "0", los OR (IC del 95 %) de lograr el objetivo al participar en 1, 2 o 3 de las actividades fueron de 1,55 (IC: 1,2-2,03), 2,34 (IC: 1,76-3,11) y 3,5 (IC: 2,21-5,53), respectivamente. Conclusión: la efectividad del programa VS se asocia directamente con el grado de participación en las actividades. Caracterizar la participación de un programa es clave para mejorar su efectividad.


Subject(s)
Obesity/therapy , Overweight/therapy , Patient Participation/psychology , Adult , Body Mass Index , Chile/epidemiology , Female , Humans , Male , Middle Aged , Obesity/psychology , Overweight/psychology , Patient Participation/statistics & numerical data , Program Evaluation/standards , Program Evaluation/statistics & numerical data , Retrospective Studies , Risk Factors , Treatment Adherence and Compliance/psychology , Treatment Adherence and Compliance/statistics & numerical data
8.
Drug Saf ; 44(2): 181-191, 2021 02.
Article in English | MEDLINE | ID: mdl-32989664

ABSTRACT

INTRODUCTION: European drug regulations aim for a patient-centered approach, including involving patients in the pharmacovigilance (PV) systems. However many patient organizations have little experience on how they can participate in PV activities. AIM: The aim of this study was to understand patient organizations' perceptions of PV, the barriers they face when implementing PV activities, and their interaction with other stakeholders and suggest methods for the stimulation of patient organizations as promoters of PV. METHODS: A sequential qualitative method study was conducted and integrated with the quantitative study performed by Matos, Weits, and van Hunsel to complete a mixed method study. RESULTS: The qualitative phase expands the understanding of the quantitative results from a previous study by broadening the knowledge on external barriers and internal barriers that patient organizations face when implementing PV activities. The strategies to stimulate patient-organization participation are the creation of more awareness campaigns, more research that creates awareness, education for patient organizations, communication of real PV examples, creation of a targeted PV system, creation of a PV communication network that provides feedback to patients, improvement of understanding of all stakeholders, and a more proactive approach from national competent authorities. CONCLUSION: Both study phases show congruent results regarding patients' involvement and the activities patient organizations perform to promote drug safety. Patient organizations progressively position themselves as stakeholders in PV, carrying out many activities that stimulate awareness and participation of their members in drug safety, but still face internal and external barriers that can hamper their involvement.


Subject(s)
Patient Participation , Pharmacovigilance , Humans , Patient Participation/methods , Patient Participation/statistics & numerical data , Qualitative Research
10.
Esc. Anna Nery Rev. Enferm ; 25(4): e20200486, 2021. tab
Article in Portuguese | BDENF - Nursing, LILACS | ID: biblio-1154203

ABSTRACT

Resumo Objetivo associar o nível de ativação com a qualidade de vida relacionada à saúde de pessoas que realizam o tratamento hemodialítico. Método estudo quantitativo, transversal e correlacional com 162 pessoas em tratamento hemodialítico. Os dados foram coletados por meio da aplicação de questionários para a caracterização sociodemográfica, socioeconômica e clínica do Kidney Disease Quality of Life Short Form e da escala Patient Activation Measure. Os dados secundários foram coletados por meio do prontuário médico. Para a análise dos dados, utilizaram-se a estatística descritiva e a regressão logística. Resultados a ativação do paciente em hemodiálise associou-se positivamente com os domínios sintomas, funcionamento físico, saúde geral, bem-estar emocional, energia/fadiga e o componente mental da qualidade de vida relacionada à saúde. Conclusão e implicação para a prática como a ativação apresenta relação com a qualidade de vida relacionada à saúde, na prática assistencial, essa métrica deve ser considerada ao implementar medidas que visem a aumentar a qualidade de vida relacionada à saúde das pessoas em hemodiálise.


Resumen Objetivo asociar el nivel de activación con la calidad de vida relacionada con la salud de las personas en hemodiálisis. Método estudio cuantitativo, transversal y correlacional con 162 personas en hemodiálisis. Los datos se recolectaron mediante la aplicación de cuestionarios para la caracterización sociodemográfica, socioeconómica y clínica del Kidney Disease Quality of Life Short Form y la escala Patient Activation Measure. Los datos secundarios se recopilaron a través de historias clínicas. Para el análisis de los datos se utilizó la estadística descriptiva y la regresión logística. Resultados la activación del paciente en hemodiálisis se asoció positivamente con los dominios síntomas, funcionamiento físico, salud general, bienestar emocional, energía / fatiga y el componente mental de la calidad de vida relacionada con la salud. Conclusión e implicación para la práctica dado que la activación presenta una relación con la calidad de vida relacionada con la salud, en la práctica asistencial esta métrica debe ser considerada a la hora de implementar medidas dirigidas a incrementar la calidad de vida relacionada con la salud de las personas en hemodiálisis.


Abstract Objective to associate the level of activation with the health-related quality of life of people undergoing hemodialysis. Method a quantitative, cross-sectional and correlational study with 162 people on hemodialysis treatment. Data was collected by applying questionnaires for sociodemographic, socioeconomic and clinical characterization of the Kidney Disease Quality of Life Short Form and the Patient Activation Measure scale. Secondary data were collected from medical records. For data analysis, descriptive statistics and logistic regression were used. Results hemodialysis patient activation was positively associated with the domains symptoms, physical functioning, general health, emotional well-being, energy/fatigue and the mental component of health-related quality of life. Conclusion and implication for the practice since activation is related to health-related quality of life, in care practice, this metric should be considered when implementing measures to increase the health-related quality of life of people on hemodialysis.


Subject(s)
Humans , Male , Female , Middle Aged , Quality of Life , Renal Dialysis , Self-Management/statistics & numerical data , Patient Participation/statistics & numerical data , Self Care/statistics & numerical data , Cross-Sectional Studies , Renal Insufficiency, Chronic/therapy
11.
Rev Bras Enferm ; 73(5): e20190086, 2020.
Article in English, Portuguese | MEDLINE | ID: mdl-32609210

ABSTRACT

OBJECTIVES: to conceive a theoretical-reflective discussion about participatory diagnosis as a methodological option in participatory research. METHODS: this is a reflection study, based on an experience that used participatory diagnosis as a research strategy in a socially vulnerable community. It was intended to implicate social groups in the search for identification and solution to the problems. RESULTS: the use of participatory diagnosis has provided significant results regarding the importance given by participants to community empowerment in the fight for health, quality of life and social empowerment. FINAL CONSIDERATIONS: participatory research and its relationship to participatory diagnosis favors the understanding of social issues, including health conditions, education and effective participation in problem solving.


Subject(s)
Diagnostic Screening Programs/standards , Patient Participation/psychology , Community-Based Participatory Research , Diagnostic Screening Programs/statistics & numerical data , Humans , Interviews as Topic/methods , Patient Participation/methods , Patient Participation/statistics & numerical data , Qualitative Research
12.
Rev Assoc Med Bras (1992) ; 66(3): 284-289, 2020 Mar.
Article in English | MEDLINE | ID: mdl-32520146

ABSTRACT

OBJECTIVE: Children with renal tumors included in clinical trials have significantly better outcomes. In Brasil, the enrollment of patients in clinical trials remains challenging. Here we aimed to describe participation accrual in the Brazilian Wilms Tumor Study Group (BWTSG) and to identify barriers to trial registration of children with renal tumors. METHODS: We determined the numbers of renal tumor diagnoses in 105 hospital-based cancer registries from 2001-2009. We then compared these totals with the numbers of renal tumor cases registered in the BWTSG from the same hospitals during the same time period. We also invited members of the Brazilian Pediatric Oncology Society to complete a 5-point Likert-type scale questionnaire regarding their opinions of the importance of participation in cooperative group trials. RESULTS: The accrual rate of patient participation per hospital varied from 25% to 76%, and was highest in the South region. The accrual rate of hospital participation also varied according to the region (20-31%) and was highest in the Southeast region. For the questionnaire regarding the importance of participation in cooperative groups, the responses showed an agreement of >75% on 10 of the 13 statements. CONCLUSION: Our results demonstrated low accrual of participation in a cooperative group trial in Brasil. We identified variations in registration rates according to geographic region and hospital, which may help targeted efforts to increase registration rates. The survey responses demonstrated that colleagues understand the importance of trial participation.


Subject(s)
Patient Participation/statistics & numerical data , Wilms Tumor/epidemiology , Adolescent , Brazil/epidemiology , Child , Child, Preschool , Humans , Infant , Infant, Newborn , Registries/statistics & numerical data , Residence Characteristics , Surveys and Questionnaires , Survival Rate
13.
Rev. Assoc. Med. Bras. (1992, Impr.) ; Rev. Assoc. Med. Bras. (1992, Impr.);66(3): 284-289, Mar. 2020. tab, graf
Article in English | Sec. Est. Saúde SP, LILACS | ID: biblio-1136215

ABSTRACT

SUMMARY OBJECTIVE Children with renal tumors included in clinical trials have significantly better outcomes. In Brasil, the enrollment of patients in clinical trials remains challenging. Here we aimed to describe participation accrual in the Brazilian Wilms Tumor Study Group (BWTSG) and to identify barriers to trial registration of children with renal tumors. METHODS We determined the numbers of renal tumor diagnoses in 105 hospital-based cancer registries from 2001-2009. We then compared these totals with the numbers of renal tumor cases registered in the BWTSG from the same hospitals during the same time period. We also invited members of the Brazilian Pediatric Oncology Society to complete a 5-point Likert-type scale questionnaire regarding their opinions of the importance of participation in cooperative group trials. RESULTS The accrual rate of patient participation per hospital varied from 25% to 76%, and was highest in the South region. The accrual rate of hospital participation also varied according to the region (20-31%) and was highest in the Southeast region. For the questionnaire regarding the importance of participation in cooperative groups, the responses showed an agreement of >75% on 10 of the 13 statements. CONCLUSION Our results demonstrated low accrual of participation in a cooperative group trial in Brasil. We identified variations in registration rates according to geographic region and hospital, which may help targeted efforts to increase registration rates. The survey responses demonstrated that colleagues understand the importance of trial participation.


RESUMO OBJETIVO Crianças com tumores renais incluídas em ensaios clínicos apresentam melhora significativa na sobrevida. No entanto, o envolvimento desses pacientes em ensaios clínicos continua sendo um desafio no Brasil. Nosso objetivo neste estudo é descrever a taxa de aderência e adesão no Grupo Cooperativo Brasileiro para tratamento de Tumor de Wilms (GCBTTW) e identificar barreiras na participação ao protocolo. MÉTODOS Identificamos o número de casos de tumores renais diagnosticados em 105 registros hospitalares de câncer no período de 2001 a 2009. O número total desses casos foi então comparado ao número de casos de tumores renais registrados no GCBTTW provenientes das mesmas unidades hospitalares e durante o mesmo período. Os membros da Sociedade Brasileira de Oncologia Pediátrica foram convidados para completar um questionário com escala do tipo likert com o objetivo de conhecer suas opiniões sobre a importância e as dificuldades na participação em ensaios clínicos de grupos cooperativos. RESULTADOS A aderência de pacientes por hospital variou de 25% a 76% e foi maior na região Sul. A adesão da participação do hospital também variou de acordo com a região (20-31%) e foi maior na região Sudeste. Com relação ao questionário referente à importância da participação em grupos cooperativos, as respostas mostraram concordância de mais de 75% em 10 das 13 afirmações. CONCLUSÃO Nossos resultados demonstraram uma baixa participação em grupos cooperativos no Brasil. Houve variações nas taxas de adesão e aderência de acordo com a região geográfica e unidade hospitalar, o que pode auxiliar em futuros esforços para a melhora dessas taxas. As respostas ao questionário demonstraram que os profissionais entendem a importância da participação em grupos cooperativos.


Subject(s)
Humans , Infant, Newborn , Infant , Child, Preschool , Child , Adolescent , Patient Participation/statistics & numerical data , Wilms Tumor/epidemiology , Brazil/epidemiology , Registries/statistics & numerical data , Residence Characteristics , Survival Rate , Surveys and Questionnaires
14.
Soc Sci Med ; 242: 112591, 2019 12.
Article in English | MEDLINE | ID: mdl-31630009

ABSTRACT

RATIONALE: Familial Hypercholesterolemia (FH) is a genetic condition that predisposes patients to substantially increased risk of early-onset atherosclerotic cardiovascular disease. FH risks can be minimized through regular participation in three self-management. BEHAVIORS: physical activity, healthy eating, and taking cholesterol lowering medication. OBJECTIVE: The present study tested the effectiveness of an integrated social cognition model in predicting intention to participate in the self-management behaviors in FH patients from seven countries. METHOD: Consecutive patients in FH clinics from Australia, Hong Kong, Brazil, Malaysia, Taiwan, China, and UK (total N = 726) completed measures of social cognitive beliefs about illness from the common sense model of self-regulation, beliefs about behaviors from the theory of planned behavior, and past behavior for the three self-management behaviors. RESULTS: Structural equation models indicated that beliefs about behaviors from the theory of planned behavior, namely, attitudes, subjective norms, and perceived behavioral control, were consistent predictors of intention across samples and behaviors. By comparison, effects of beliefs about illness from the common sense model were smaller and trivial in size. Beliefs partially mediated past behavior effects on intention, although indirect effects of past behavior on intention were larger for physical activity relative to taking medication and healthy eating. Model constructs did not fully account for past behavior effects on intentions. Variability in the strength of the beliefs about behaviors was observed across samples and behaviors. CONCLUSION: Current findings outline the importance of beliefs about behaviors as predictors of FH self-management behaviors. Variability in the relative contribution of the beliefs across samples and behaviors highlights the imperative of identifying sample- and behavior-specific correlates of FH self-management behaviors.


Subject(s)
Health Knowledge, Attitudes, Practice , Hyperlipoproteinemia Type II/psychology , Intention , Patient Participation/psychology , Self-Management/psychology , Australia , Brazil , China , Cross-Sectional Studies , Female , Hong Kong , Humans , Hyperlipoproteinemia Type II/complications , Hyperlipoproteinemia Type II/therapy , Malaysia , Male , Patient Participation/methods , Patient Participation/statistics & numerical data , Self-Management/methods , Self-Management/statistics & numerical data , Surveys and Questionnaires , Taiwan , United Kingdom
15.
Soc Sci Med ; 238: 112462, 2019 10.
Article in English | MEDLINE | ID: mdl-31476663

ABSTRACT

We apply mixed methods to explore how a conditional cash transfer (CCT) may influence intimate partner violence (IPV). Qualitative interviews with female beneficiaries of Bolsa Familia, Brazil's CCT program, and service providers suggest positive, negative, and null associations between CCTs and IPV are all plausible. These associations result from a combination of economic and psychological motivations. We also use quantitative methods to examine if the expansion of Bolsa Familia between 2004 and 2009 affects the female homicide rate and marital separations. Using municipal level data in a difference-in-differences analysis, we find null associations between Bolsa Familia and female homicides. When we examine the impact on marriages and separations, indicative of a change in the reservation utility of women within the household, we find no impact on marriages but Bolsa Familia is associated with an increase in separations, and, to a greater extent, separations of couples with children. These results suggest Bolsa Familia impacts women's agency within the family, but not to the extent that it reduces the most extreme form of IPV.


Subject(s)
Intimate Partner Violence/psychology , Patient Participation/psychology , Poverty/statistics & numerical data , Adolescent , Adult , Brazil , Female , Humans , Income/statistics & numerical data , Interviews as Topic/methods , Intimate Partner Violence/statistics & numerical data , Middle Aged , Patient Participation/statistics & numerical data , Qualitative Research
16.
J Nurs Meas ; 27(1): 97-113, 2019 04 01.
Article in English | MEDLINE | ID: mdl-31068494

ABSTRACT

BACKGROUND AND PURPOSE: To assess the psychometric properties of the PAM13 Brazilian-Portuguese (PAM13-B) among outpatients with chronic diseases. METHODS: 513 adults participated, diagnosed with a chronic disease for more than 6 months, under outpatient monitoring. Reliability was tested using internal consistency and test-retest reliability. Construct validity was verified through different techniques (correlation between activation and self-esteem measures, anxiety, depression and health status), known-groups validity and dimensionality by means of confirmatory factor analysis. Significance was set at 0.05. RESULTS: The PAM13-B presented appropriate results for internal consistency (α = 0.83) and test-retest reliability (intraclass correlation coefficient [ICC] = 0.81). A moderate correlation was found between activation and self-esteem only (r = 0.43, p < 0.001). The one-dimensional structure was not confirmed in the sample analyzed. CONCLUSIONS: In the study sample, the version PAM13-B demonstrated its reliability and validity, but with a two-factor structure.


Subject(s)
Chronic Disease/psychology , Patient Participation/psychology , Patient Participation/statistics & numerical data , Psychometrics/statistics & numerical data , Psychometrics/standards , Surveys and Questionnaires/statistics & numerical data , Surveys and Questionnaires/standards , Adult , Aged , Aged, 80 and over , Brazil , Factor Analysis, Statistical , Female , Humans , Male , Middle Aged , Reproducibility of Results
17.
Cancer Prev Res (Phila) ; 12(3): 159-170, 2019 03.
Article in English | MEDLINE | ID: mdl-30651294

ABSTRACT

Most cervical cancers occur in women who do not participate in cervical-cancer screening. We therefore evaluated adherence to screening for clinic-based Pap testing, self-collected sampling for HPV testing, and choice of the 2 among 483 unscreened/underscreened women in Brazil. Three public Basic Health Units (BHU) were each randomly assigned to three arms: (i) Pap testing at the BHU (N = 160), (ii) "Self&HPV" (self-collection for HPV testing) (N = 161), and (iii) "Choice" between self-collection and HPV testing and Pap test at the local BHU (N = 162). The theory-based (PEN-3 and Health Belief Model) intervention in all three arms was implemented by trained Community Health Workers (CHW) at participants' home. With the first invitation, 60.0% in the Pap arm, 95.1% [154 of 161 (95.7%) who selected Self&HPV and 0 of 1 (0.0%) who selected Pap] in the Choice arm, and 100% in the Self&HPV arm completed screening. By the second invitation to choose a method of screening in the Choice arm, 100% completed screening. After three invitations, 75.0% of women in the Pap arm completed screening. Adherence to screening differed by study arm (P < 0.001). In conclusion, Self&HPV testing is a promising strategy for unscreened/underscreened women who are recalcitrant or unable to undergo clinic-based cervical screening to complement the screening modality used in the general population. In Brazil, where Pap testing is recommended for routine cervical screening, training CHWs in behavior change strategies and offering Self&HPV or Choice could greatly improve screening population coverage by reaching the unscreened/underscreened populations.


Subject(s)
Diagnostic Self Evaluation , Early Detection of Cancer/methods , Papanicolaou Test/statistics & numerical data , Patient Participation/statistics & numerical data , Specimen Handling/methods , Uterine Cervical Neoplasms/diagnosis , Vaginal Smears/statistics & numerical data , Adult , Early Detection of Cancer/psychology , Female , Follow-Up Studies , Humans , Middle Aged , Papanicolaou Test/psychology , Papillomaviridae/isolation & purification , Papillomavirus Infections/complications , Papillomavirus Infections/virology , Prognosis , Uterine Cervical Neoplasms/psychology , Uterine Cervical Neoplasms/virology , Vaginal Smears/psychology , Uterine Cervical Dysplasia/diagnosis , Uterine Cervical Dysplasia/psychology , Uterine Cervical Dysplasia/virology
18.
J Pediatr ; 202: 129-135, 2018 11.
Article in English | MEDLINE | ID: mdl-30025672

ABSTRACT

OBJECTIVES: To characterize the children who were referred, determine the proportion of referred children who enrolled, and examine factors associated with enrollment in multidisciplinary clinical care for pediatric weight management. STUDY DESIGN: This cross-sectional study included the population of children (2-17 years of age; body mass index of ≥85th percentile) referred to 1 of 3 hospital-based multidisciplinary weight management clinics in Alberta, Canada, from April 2013 to April 2016. Referral and enrollment data were obtained from Alberta Health Services databases. Bivariate and multivariable logistic regression models were used to determine the independent and combined effects of predictors of enrollment. RESULTS: Of the 2014 children (51.8% male; mean body mass index z-score: 3.42 ± 0.03) referred to multidisciplinary clinical care, 757 (37.6%) enrolled in care. Most referred children had severe obesity and were referred by physicians. Several factors independently predicted enrollment; however, in our most parsimonious multivariable model, only the time gap (OR, 0.94; 95% CI, 0.88-0.99; P = .03) between the attendance date of the orientation session and the booking date of initial appointment predicted enrollment for all children. Body mass index z-score (OR, 0.81; 95% CI, 0.67-0.98; P = .03) and time gap (OR, 0.92; 95% CI, 0.85-0.99; P = .02) predicted enrollment in children with severe obesity exclusively. CONCLUSIONS: Fewer than 40% of referred children enrolled in multidisciplinary clinical care. Reducing the duration of enrollment and providing additional support for treatment initiation to children with severe obesity may enhance treatment uptake for pediatric weight management.


Subject(s)
Patient Participation/statistics & numerical data , Pediatric Obesity/therapy , Weight Reduction Programs , Alberta , Body Mass Index , Child , Child, Preschool , Cross-Sectional Studies , Female , Humans , Male , Referral and Consultation , Retrospective Studies
19.
Rev. bras. enferm ; Rev. bras. enferm;71(2): 259-264, Mar.-Apr. 2018.
Article in English | LILACS, BDENF - Nursing | ID: biblio-898451

ABSTRACT

ABSTRACT Objective: To investigate the perception and attitude of health professionals (HPs) about the patient participation in hand hygiene (HH). Method: A cross-sectional study with 150 HPs from a university hospital in Brazil. A descriptive analysis was conducted. Results: Simple hand hygiene was the preferred method of HPs, rather than hand rubbing with alcohol-based solutions. A total of 83.3% of the HPs supported the patient participation in reminding them about HH, but 48% reported that they would feel uncomfortable; 45.3%, comfortable; and 20.7% were familiar with the "Patients for Patient Safety" program. Conclusion: HPs showed limited knowledge about HH, opposing recommendations on the topic. The contradiction between the HPs acceptance and attitude when questioned by the patient regarding HH was revealed, reflecting a lack of knowledge about the WHO program and the need to implement educational practices in health.


RESUMEN Objetivo: Investigar la percepción y actitud de profesionales de salud (PS) sobre la participación del paciente en la higienización de manos (HM). Método: Estudio transversal, realizado con 150 PS de un hospital universitario de Brasil. Se realizó un análisis descriptivo. Resultados: La higiene simple de manos fue el método preferido de los PS, en detrimento de la fricción con preparación alcohólica. De los PS, 83,3% apoyaban a la participación del paciente en recordarlos sobre la HM, pero 48% relataron que se sentirían incómodos; 45,3%, confortables; y 20,7% conocían el programa "Pacientes en Defensa de su Seguridad". Conclusión: Los PS mostraron conocimiento limitado sobre HM, contraponiendo las recomendaciones sobre el tema. Además, revelaron contradicción entre su aceptación y actitud a respecto de que sean cuestionados por el paciente sobre la HM, refletando desconocimiento del programa de la OMS y la necesidad de implementación de prácticas educativas en salud.


RESUMO Objetivo: Investigar a percepção e atitude dos profissionais de saúde (PS) sobre a participação do paciente na higienização das mãos (HM). Método: Estudo transversal, realizado com 150 PS de um hospital universitário do Brasil. Realizou-se uma análise descritiva. Resultados: A higiene simples das mãos foi o método preferido dos PS, em detrimento da fricção com preparação alcoólica. Dos PS, 83,3% apoiavam à participação do paciente em lembrá-los sobre a HM, mas 48% relataram que se sentiriam desconfortáveis; 45,3%, confortáveis; e 20,7% conheciam o programa "Paciente Pela Segurança do Paciente". Conclusão: PS mostraram conhecimento limitado sobre a HM, contrapondo as recomendações sobre o tema. Revelou-se a contradição entre a aceitação e atitude dos PS em serem questionados pelo paciente a respeito da HM, refletindo desconhecimento do programa da OMS e a necessidade de implementação de práticas educativas em saúde.


Subject(s)
Humans , Male , Female , Adult , Patient Participation/methods , Health Personnel/standards , Guideline Adherence/standards , Hand Hygiene/methods , Patient Participation/psychology , Patient Participation/statistics & numerical data , Brazil , Attitude of Health Personnel , Cross-Sectional Studies , Surveys and Questionnaires , Health Personnel/psychology , Health Personnel/statistics & numerical data , Guideline Adherence/statistics & numerical data , Hand Hygiene/standards , Hand Hygiene/statistics & numerical data , Middle Aged
20.
Rev Bras Enferm ; 71(2): 259-264, 2018.
Article in English, Portuguese | MEDLINE | ID: mdl-29412281

ABSTRACT

OBJECTIVE: To investigate the perception and attitude of health professionals (HPs) about the patient participation in hand hygiene (HH). METHOD: A cross-sectional study with 150 HPs from a university hospital in Brazil. A descriptive analysis was conducted. RESULTS: Simple hand hygiene was the preferred method of HPs, rather than hand rubbing with alcohol-based solutions. A total of 83.3% of the HPs supported the patient participation in reminding them about HH, but 48% reported that they would feel uncomfortable; 45.3%, comfortable; and 20.7% were familiar with the "Patients for Patient Safety" program. CONCLUSION: HPs showed limited knowledge about HH, opposing recommendations on the topic. The contradiction between the HPs acceptance and attitude when questioned by the patient regarding HH was revealed, reflecting a lack of knowledge about the WHO program and the need to implement educational practices in health.


Subject(s)
Guideline Adherence/standards , Hand Hygiene/methods , Health Personnel/standards , Patient Participation/methods , Adult , Attitude of Health Personnel , Brazil , Cross-Sectional Studies , Female , Guideline Adherence/statistics & numerical data , Hand Hygiene/standards , Hand Hygiene/statistics & numerical data , Health Personnel/psychology , Health Personnel/statistics & numerical data , Humans , Male , Middle Aged , Patient Participation/psychology , Patient Participation/statistics & numerical data , Surveys and Questionnaires
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