Shared decision making for patients needing dentofacial orthopedics, orthognathic surgery, and conventional non-surgical fixed appliance therapy: a comparison between Pakistani patients' and clinicians' perspective.

INTRODUCTION: Shared decision making (SDM) involves presenting patients with relevant information about a health issue and reaching a clinical decision based on their preferences. However, its application in orthodontics lacks documentation. OBJECTIVE: This study aimed to assess and compare the perspectives of patients and clinicians on SDM in different cases. METHODS: A cross-sectional study was conducted at a tertiary care hospital in Pakistan, involving 90 patients categorized into three groups (dentofacial orthopedics, orthognathic surgery, and conventional non-surgical fixed appliance treatment). Following clinical assessment and treatment plan discussions, patients and clinicians completed a 12-item dyadic observing patient involvement in decision making (OPTION) questionnaire, to gauge their perspectives on SDM. Mean OPTION scale scores were compared using paired sample t-tests between clinicians and patients, and intergroup comparisons utilized paired sample t-tests and Pearson correlation coefficients. RESULTS: OPTION scores were similar between patients/parents and clinicians. However, statistically significant differences were found regarding the questions about "different sources of information", "different options (including the possibility of doing nothing)" and "concerns regarding management", with the patients giving overall lower OPTION scores. Patients gave lower SDM OPTION scores for conventional orthodontic treatment, but higher scores for orthopedic and orthognathic surgery, as compared to the clinicians. CONCLUSIONS: The current study revealed an overall consensus in the mean total scores of OPTION scales between patients and clinicians. However, when stratified, patients showed higher SDM scores for orthopedic and orthognathic cases, and lower scores for conventional orthodontic treatment.

Patient Engagement With and Perceptions of the COVIDA Project, a Volunteer-Led Telemonitoring and Teleorientation Service for COVID-19 Community Management: Mixed Methods Study.

BACKGROUND: During the pandemic in Peru, the COVIDA (Collaboration Network of Volunteer Brigade Members for the Investigation, Detection, and Primary Management of Community Cases Affected by COVID-19) project proposed an innovative way to provide telemonitoring and teleorientation to COVID-19 patients, led by health care student volunteers. However, it has not been described how this interaction is perceived from the patient's perspective and which factors increase their engagement with this service. OBJECTIVE: The aim of this study is to describe the perceptions of patients about COVIDA and identify factors associated with their engagement with this service. METHODS: A mixed methods study was conducted to evaluate perceptions of patients that participated in the COVIDA project. This telehealth intervention organized by the National University of San Marcos was implemented in Peru from August to December 2020. The service involved daily phone calls by volunteer students to monitor registered COVID-19 patients until the completion of the 14th day of the illness or if a warning sign was identified. The volunteers also provided teleorientation to address the patients' needs and concerns. Quantitative analysis was performed to describe the characteristics of the patients and to assess the factors related to their engagement with the service, which was defined by the percentage of participants who completed the follow-up according to their individual schedule. Qualitative analysis through semistructured interviews evaluated the patients' perceptions of the service regarding the aspects of communication, interaction, and technology. RESULTS: Of the 770 patients enrolled in COVIDA, 422 (55.7%) were female; the median age was 39 (IQR 28-52) years. During the monitoring, 380 patients (49.4%) developed symptoms, and 471 (61.2%) showed warning signs of COVID-19. The overall median for engagement was 93% (IQR 35.7%-100%). Among those patients who did not develop warning signs, engagement was associated with the presence of symptoms (OR 3.04, 95% CI 2.22-4.17), a positive COVID-19 test at the start of follow-up (OR 1.97, 95% CI 1.48-2.61), and the presence of comorbidities (OR 1.83, 95% CI 1.29-2.59). Patients reported that the volunteers provided clear and valuable information and emotional support. Communication via phone calls took place smoothly and without interruptions. CONCLUSIONS: COVIDA represents a well-accepted and well-perceived alternative model for student volunteers to provide telemonitoring, teleorientation, and emotional support to patients with COVID-19 in the context of overwhelmed demand for health care services. The deployment of this kind of intervention should be prioritized among patients with symptoms and comorbidities, as they show more engagement with these services.

A study on obese patients' participation in cancer screening programs: an example from Turkey.

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.

Reducing the Gap in Knowledge and Expectations between Clinicians and People with Polycystic Ovary Syndrome or Adrenal Conditions: Simulation via Instant Messaging-Birmingham Advance: Patient and Public Involvement (SIMBA-PPI) Study.

BACKGROUND: To evaluate the efficacy of SIMBA as an educational intervention for both HCPs and people with either PCOS or adrenal conditions and to study the change in knowledge of people with PCOS or adrenal conditions about the conditions and expectations from the HCPs involved in their care following SIMBA-PPI sessions. METHODS: Two SIMBA-PPI sessions (SIMBA-PPI Polycystic ovary syndrome (SIMBA-PCOS) and SIMBA-PPI Adrenal conditions (SIMBA-Adrenal conditions)) were conducted in September 2021 and March 2022. In both sessions, HCPs interacted with moderators on patient management through WhatsApp. Patients with respective conditions underwent workshop-style learning in the same cases. SIMBA-PCOS transcripts were also translated into Brazilian Portuguese and workshops were held in both Brazilian Portuguese and English. The two groups (HCPs and patients) were then brought together to discuss exploring gaps in knowledge and expectations. The Wilcoxon Signed-Rank test compared differences in pre- and post-SIMBA self-reported confidence levels in HCPs and patients. Qualitative data from the online recordings were transcribed and analysed with inductive thematic analysis to identify gaps in knowledge and expectations from managing the cases. RESULTS: 48 HCPs and 25 patients participated in our study. When compared to pre-SIMBA confidence levels, SIMBA-PPI sessions effectively improved clinicians' confidence in managing PCOS (40.5%, p < .001) and adrenal conditions (23.0%, p < .001) post-SIMBA. Patient participants' confidence in HCPs significantly increased in the PCOS session (SIMBA-PCOS: 6.25%, p = 0.01). CONCLUSIONS: Integration of PPI into SIMBA improved HCPs' confidence in managing PCOS and adrenal conditions. SIMBA-PPI also improved patients' confidence in HCPs. Our findings suggest that participating in SIMBA-PPI sessions can reduce the gap in knowledge and expectations between patients and HCPs involved in their care.

Promoting equity, diversity, and inclusion in surveys: insights from a patient-engaged study to assess long COVID health-care needs in Brazil.

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.

Engaging women to set the research agenda for assisted vaginal birth.

INTRODUCTION: Public and patient involvement can provide crucial insights to optimise research by enhancing relevance and appropriateness of studies. The World Health Organization (WHO) engaged in an inclusive process to ensure that both technical experts and women had a voice in defining the research gaps and needs to increase or reintroduce the use of assisted vaginal birth (AVB) in settings where this intervention is needed but unavailable or underused. METHODS: We describe the methods and outcomes of online workshops led by WHO to obtain women representatives' perspectives about AVB research gaps and needs. RESULTS: After technical experts created a list of research questions based on various evidence syntheses, WHO organised four online workshops with 31 women's representatives from 27 mostly low- and middle-income (LMIC) countries. Women rated the importance and priority of the research questions proposed by the technical experts, improving and broadening some of them, added new questions, and voiced their main concerns and views about AVB. Women helped to put the research questions into context in their communities, highlighted neglected factors/dimensions that influence practices and affect women's experience during labour and childbirth, underscored less salient consequences of AVB, and highlighted the main concerns of women about research on AVB. The consolidated vision of technical experts and women's representatives resulted in a technical brief published by WHO. The technical brief is expected to stimulate global research and action closely aligned with women's priorities. CONCLUSIONS: We describe a successful experience of engaging women, mostly from LMICs, in the identification of research gaps and needs to reintroduce AVB use. This process contributed to better aligning research questions with women's views, concerns, and priorities. Given the scarcity of reports about engaging women from LMICs to optimise research, this successful experience can serve as an inspiration for future work. PATIENT OR PUBLIC CONTRIBUTION: Women representatives were involved at every stage of the workshops described in full in this manuscript.

A scoping review of patient and public involvement in empirical stroke research.

BACKGROUND: Impactful, evidence-based solutions in surveillance, prevention, acute care, and rehabilitation for stroke survivors are required to address the high global burden of stroke. Patient and public involvement (PPI), where patients, their families, and the public are actively involved as research partners, enhances the relevance, credibility, and impact of stroke-related research. AIMS: This scoping review, adhering to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) Scoping Review guidelines, aims to identify and summarize how PPI is currently implemented and reported in empirical stroke research using a participatory approach. SUMMARY OF REVIEW: A comprehensive search strategy was developed and implemented across Medline, CINAHL, EMBASE, PsynchINFO, and Cochrane electronic databases, supplemented by gray literature searches. Empirical stroke research articles in the English language, published from 2014 up to 2023, and documenting PPI activity were included. Of the 18,143 original articles identified, 2824 full-text manuscripts matching from this time window were screened. Only 2% (n = 72) of these directly reported embedded PPI activity in empirical research. The majority were qualitative in design (60%) and conducted in high-income countries (96%). Only one included study originated from a developing country, where the burden of stroke is highest. Most studies (94%) provided some information about the activities carried out with their PPI partners, mainly centered on the study design (57%) and management (64%), with only 4% of studies integrating PPI across all research cycle phases from funding application to dissemination. When studies were examined for compliance with the Guidance for Reporting Involvement of Patients and the Public (GRIPP) short-form checklist, only 11% of included studies were 100% compliant. Twenty-one studies (29%) reported barriers and facilitators to including PPI in stroke research. Organization, authentic partnership, and experienced PPI representatives were common facilitators and identified barriers reflected concerns around adequate funding, time required, and diversity in perspectives. A positive reporting bias for PPI impact was observed, summarized as keeping the patient perspective central to the research process, improved care of study participants, validation of study findings, and improved communication/lay-summaries of complex research concepts. CONCLUSIONS: PPI is underutilized and inconsistently reported in current empirical stroke research. PPI must become more widely adopted, notably in low- and middle-income countries. Consensus-driven standards for inclusion of PPI by funding organizations and publishers are required to support its widespread adoption.

Patients' perspectives on planned interventions tested in the Otago MASTER feasibility trial: an implementation-based process evaluation study.

BACKGROUND: Patients are key stakeholders of clinical research, and their perspectives are relevant for researchers when planning and conducting clinical trials. Numerous aspects of trial process can influence participants' experiences. Their experiences within a trial can impact retention rates. Poor treatment adherence may bias treatment effect estimates. One way to improve recruitment and adherence is to design trials that are aligned with patients' needs and preferences. This study reports a process evaluation of the Otago MASTER feasibility trial. OBJECTIVES: Our aims were to investigate the patients' perceptions of the trial interventions through individual interviews. METHODS: Twenty-five participants were recruited for the feasibility trial and were allocated to two groups: tailored or standardised exercise. Sixteen participants agreed to take part in individual semi-structured interviews. Interviews were transcribed verbatim, and all interviews were analysed thematically using an iterative approach. RESULTS: Our key findings suggest participants: (1) took part in the study to access healthcare services and contribute to research; (2) valued interventions received; (3) reported certain barriers and facilitators to participate in the trial; and (4) highlighted areas for improvement when designing the full trial. CONCLUSION: Participants volunteered to access healthcare and to contribute to research. Participants valued the personalised care, perceived that their engagement within the trial improved their self-management and self-efficacy behaviour, valued the time spent with clinicians, and the empathetic environment and education received. Facilitators and barriers will require careful consideration in the future as the barriers may impact reliability and validity of future trial results.

Shared decision-making for supporting women's decisions about breast cancer screening.

BACKGROUND: In breast cancer screening programmes, women may have discussions with a healthcare provider to help them decide whether or not they wish to join the breast cancer screening programme. This process is called shared decision-making (SDM) and involves discussions and decisions based on the evidence and the person's values and preferences. SDM is becoming a recommended approach in clinical guidelines, extending beyond decision aids. However, the overall effect of SDM in women deciding to participate in breast cancer screening remains uncertain. OBJECTIVES: To assess the effect of SDM on women's satisfaction, confidence, and knowledge when deciding whether to participate in breast cancer screening. SEARCH METHODS: We searched the Cochrane Breast Cancer Group's Specialised Register, CENTRAL, MEDLINE, Embase, CINAHL, PsycINFO, ClinicalTrials.gov, and the World Health Organization International Clinical Trials Registry Platform on 8 August 2023. We also screened abstracts from two relevant conferences from 2020 to 2023. SELECTION CRITERIA: We included parallel randomised controlled trials (RCTs) and cluster-RCTs assessing interventions targeting various components of SDM. The focus was on supporting women aged 40 to 75 at average or above-average risk of breast cancer in their decision to participate in breast cancer screening. DATA COLLECTION AND ANALYSIS: Two review authors independently assessed studies for inclusion and conducted data extraction, risk of bias assessment, and GRADE assessment of the certainty of the evidence. Review outcomes included satisfaction with the decision-making process, confidence in the decision made, knowledge of all options, adherence to the chosen option, women's involvement in SDM, woman-clinician communication, and mental health. MAIN RESULTS: We identified 19 studies with 64,215 randomised women, mostly with an average to moderate risk of breast cancer. Two studies covered all aspects of SDM; six examined shortened forms of SDM involving communication on risks and personal values; and 11 focused on enhanced communication of risk without other SDM aspects. SDM involving all components compared to control The two eligible studies did not assess satisfaction with the SDM process or confidence in the decision. Based on a single study, SDM showed uncertain effects on participant knowledge regarding the age to start screening (risk ratio (RR) 1.18, 95% confidence interval (CI) 0.61 to 2.28; 133 women; very low certainty evidence) and frequency of testing (RR 0.84, 95% CI 0.68 to 1.04; 133 women; very low certainty evidence). Other review outcomes were not measured. Abbreviated forms of SDM with clarification of values and preferences compared to control Of the six included studies, none evaluated satisfaction with the SDM process. These interventions may reduce conflict in the decision made, based on two measures, Decisional Conflict Scale scores (mean difference (MD) -1.60, 95% CI -4.21 to 0.87; conflict scale from 0 to 100; 4 studies; 1714 women; very low certainty evidence) and the proportion of women with residual conflict compared to control at one to three months' follow-up (rate of women with a conflicted decision, RR 0.75, 95% CI 0.56 to 0.99; 1 study; 1001 women, very low certainty evidence). Knowledge of all options was assessed through knowledge scores and informed choice. The effect of SDM may enhance knowledge (MDs ranged from 0.47 to 1.44 higher scores on a scale from 0 to 10; 5 studies; 2114 women; low certainty evidence) and may lead to higher rates of informed choice (RR 1.24, 95% CI 0.95 to 1.63; 4 studies; 2449 women; low certainty evidence) compared to control at one to three months' follow-up. These interventions may result in little to no difference in anxiety (MD 0.54, 95% -0.96 to 2.14; scale from 20 to 80; 2 studies; 749 women; low certainty evidence) and the number of women with worries about cancer compared to control at four to six weeks' follow-up (RR 0.88, 95% CI 0.73 to 1.06; 1 study, 639 women; low certainty evidence). Other review outcomes were not measured. Enhanced communication about risks without other SDM aspects compared to control Of 11 studies, three did not report relevant outcomes for this review, and none assessed satisfaction with the SDM process. Confidence in the decision made was measured by decisional conflict and anticipated regret of participating in screening or not. These interventions, without addressing values and preferences, may result in lower confidence in the decision compared to regular communication strategies at two weeks' follow-up (MD 2.89, 95% CI -2.35 to 8.14; Decisional Conflict Scale from 0 to 100; 2 studies; 1191 women; low certainty evidence). They may result in higher anticipated regret if participating in screening (MD 0.28, 95% CI 0.15 to 0.41) and lower anticipated regret if not participating in screening (MD -0.28, 95% CI -0.42 to -0.14). These interventions increase knowledge (MD 1.14, 95% CI 0.61 to 1.62; scale from 0 to 10; 4 studies; 2510 women; high certainty evidence), while it is unclear if there is a higher rate of informed choice compared to regular communication strategies at two to four weeks' follow-up (RR 1.27, 95% CI 0.83 to 1.92; 2 studies; 1805 women; low certainty evidence). These interventions result in little to no difference in anxiety (MD 0.33, 95% CI -1.55 to 0.99; scale from 20 to 80) and depression (MD 0.02, 95% CI -0.41 to 0.45; scale from 0 to 21; 2 studies; 1193 women; high certainty evidence) and lower cancer worry compared to control (MD -0.17, 95% CI -0.26 to -0.08; scale from 1 to 4; 1 study; 838 women; high certainty evidence). Other review outcomes were not measured. AUTHORS' CONCLUSIONS: Studies using abbreviated forms of SDM and other forms of enhanced communications indicated improvements in knowledge and reduced decisional conflict. However, uncertainty remains about the effect of SDM on supporting women's decisions. Most studies did not evaluate outcomes considered important for this review topic, and those that did measured different concepts. High-quality randomised trials are needed to evaluate SDM in diverse cultural settings with a focus on outcomes such as women's satisfaction with choices aligned to their values.

Patient activation levels and socioeconomic factors among the Amazonas population with diabetes: a cross-sectional study.

BACKGROUND: The presence of chronic conditions such as type 2 diabetes mellitus (T2DM) requires behavioral lifestyle changes mediated by individuals' motivation for change and adherence to treatment. This study aims to explore activation levels in individuals with T2DM treated in primary care facilities and to identify the association between demographic, clinical, psychosocial factors, and patient activation amongst populations in the Brazilian state of Amazonas. METHODS: SAPPA is a cross-sectional study conducted in Amazonas, approved by the Universidade Federal do Amazona's IRB in Brazil. Individuals with T2DM were evaluated in their homes (n = 4,318,325). The variables were sex, age, skin color, education level; health-related variables such as body mass index, nutritional behavior, and frequency of physical activity. Measures related to patient self-management behaviors over the past 6 months (Patient Activation Measure - PAM-13) were included in the survey. Descriptive and frequency data are presented as mean (standard deviation (SD)) or numeric percentage). Statistical testing was performed using IBM SPSS V.26, and a p-value of < 0.050 showed significance. Activation levels were dichotomized into low activation (Levels 1 and 2) and high activation (Levels 3 and 4). A multivariate linear model assessed the association between the PAM-13 score and the following variables: age, sex, BMI, skin color, number of comorbidities, burden of symptoms, and number of medications. RESULTS: Logistic regression analyses indicated a statistically significant association between sex, age, education, self-rated health, and general satisfaction with life. men were 43% more likely to score lower levels (p < 0.001). The results also indicated that advanced age had lower PAM levels (p < 0.001). Participants with fewer years of education were 44% more likely to have lower levels of PAM (p = 0.03). Worse self-rated health (p < 0.001) and lower general life satisfaction (p = 0.014) were associated with lower PAM levels. CONCLUSIONS: Low patient activation was associated with worse sociodemographic, health, and psychological conditions in the Amazon population. The low level of patient activation observed in this sample highlights an important impediment to diabetes disease management/self-management in disadvantaged populations.

When and how to discuss about palliative care and advance care planning with cancer patients: A mixed-methods study.

OBJECTIVES: To identify the patients who are most likely to participate in discussions about palliative care (PC) and advance care planning (ACP), and to determine their preferred timing and approach of discussion. METHODS: The study included women aged 18-75 years diagnosed with breast cancer. In the quantitative phase, sociodemographic and clinical characteristics, knowledge, decision-making, and stigmas were evaluated. The qualitative phase included questions about patients' understanding, timing, and method of discussing PC and ACP, which were analyzed by Bardin's content analysis. RESULTS: In Phase 1, a total of 115 participants were included, with 53.04% completing both phases and 46.96% declining further participation. Those who completed both phases exhibited higher rates of marriage and educational attainment, while those who declined Phase 2 had a higher prevalence of advanced-stage cancer and palliative treatment. Completion of both phases was associated with a greater knowledge of reality and increased awareness of PC and ACP. Furthermore, the qualitative analysis revealed 5 convergent themes: timing, demystification, patient empowerment, misconception elimination, and open communication. These themes informed the development of a conceptual model that provides a framework for discussing PC and ACP with patients at different stages of cancer diagnosis and treatment, highlighting appropriate and inappropriate approaches and timing. SIGNIFICANCE OF RESULTS: Early discussion is beneficial, but withholding information or infringing on autonomy should be avoided. The study reveals that married and highly educated individuals tend to be more receptive to these discussions. However, patients with late-stage cancer tend to decline participation. Patients value open communication, demystification of PC, and empowering discussions that eliminate misunderstandings. Efforts should be made to reach patients with limited familiarity, particularly those with late-stage cancer, to increase their receptiveness to enable well-informed decision-making.

Educational video for self-care with arteriovenous fistula in renal patients: randomized clinical trial / Video educativo para el autocuidado de la fístula arteriovenosa en pacientes renales: ensayo clínico aleatorizado / Vídeo educacional para autocuidado com a fístula arteriovenosa de pacientes renais: ensaio clínico randomizado

Objective: to evaluate the effect of an educational video on the knowledge, attitude, and practice of self-care with arteriovenous fistula in patients undergoing hemodialysis treatment. Method: randomized controlled clinical trial, with two arms and single-blind. The intervention used an educational video on arteriovenous fistula self-care. The Fistula Self-Care Knowledge, Attitude, and Practice Scale was applied to 27 renal patients on hemodialysis in the control group and 28 in the intervention group at baseline, after seven and fourteen days. The data was analyzed using the Statistical Package for the Social Sciences software, using the chi-square test, Student's t-test, Mann-Whitney test, and Friedman's test with post-hoc analysis for multiple comparisons. Results: there were statistically significant differences in the knowledge and practice of self-care with the fistula at 0, 7 and, 14 days in the intervention (p= 0.004 and p<0.001, respectively) and control groups (p<0.001 for knowledge and practice). Attitude showed a significant difference at follow-up (p<0.001), but the post-hoc analysis did not confirm the significance obtained. Conclusion: patients' knowledge and practice showed significant increases at follow-up in the control and intervention groups, while the increase in attitude was not significant in either group. Clinical trial, registration number: U1111-1241-6730.

Objetivo: evaluar el efecto de un video educacional en el conocimiento, actitud y práctica del autocuidado de la fístula arteriovenosa de pacientes en tratamiento de hemodiálisis. Método: ensayo clínico aleatorio controlado, con dos brazos y simple ciego. La intervención utilizó un video educacional sobre el autocuidado de la fístula arteriovenosa. Fue aplicada la Escala de conocimiento, actitud y práctica del autocuidado de la fístula en 27 pacientes renales en hemodiálisis del grupo control y en 28 del grupo intervención en la línea de base, después de siete y catorce días. Los datos fueron analizados con el software Statistical Package for the Social Sciences , con la aplicación de las pruebas Chi-cuadrado, T de Student, Mann-Whitney y Test de Friedman, con análisis post-hoc para comparaciones múltiples. Resultados: se verificaron diferencias estadísticamente significativas en el conocimiento y práctica del autocuidado de la fístula en el seguimiento de 0, 7 y 14 días de los grupos intervención (p= 0,004 y p<0,001, respectivamente) y control (p<0,001 para el conocimiento y práctica). La actitud presentó diferencia significativa en el seguimiento (p<0,001), pero el análisis post-hoc no confirmó la significación obtenida. Conclusión: el conocimiento y práctica de los pacientes presentaron aumentos significantes en el seguimiento en los grupos control e intervención, en cuanto que el aumento de la actitud no fue significativo en ninguno de los grupos. Ensayo clínico, número de registro: U1111-1241-6730.

Objetivo: avaliar o efeito de um vídeo educacional no conhecimento, atitude e prática de autocuidado com a fístula arteriovenosa de pacientes em tratamento hemodialítico. Método: ensaio clínico randomizado controlado, com dois braços e unicego. A intervenção utilizou um vídeo educacional sobre o autocuidado com a fístula arteriovenosa. Foi aplicada a Escala de conhecimento, atitude e prática de autocuidado com a fístula em 27 pacientes renais em hemodiálise do grupo controle e 28 do grupo intervenção na linha de base, após sete e quatorze dias. Os dados foram analisados no software Statistical Package for the Social Sciences , com a aplicação dos testes qui-quadrado, T de Student, Mann-Whitney e Teste de Friedman com análise post-hoc para comparações múltiplas. Resultados: verificaram-se diferenças estatisticamente significantes no conhecimento e prática de autocuidado com a fístula no seguimento de 0, 7 e 14 dias dos grupos intervenção (p= 0,004 e p<0,001, respectivamente) e controle (p<0,001 para o conhecimento e prática). A atitude apresentou diferença significativa no seguimento (p<0,001), mas a análise post-hoc não confirmou a significância obtida. Conclusão: o conhecimento e prática dos pacientes apresentaram aumentos significativos no seguimento nos grupos controle e intervenção, enquanto o aumento da atitude não foi significativo em nenhum dos grupos. Ensaio clínico, número de registro: U1111-1241-6730.

Demandas e recursos para predição da síndrome de burnout em psicólogos clínicos / Demands and resources for burnout syndrome on clinical psychologists / Demandas y recursos para la predicción del síndrome de burnout en psicólogos clínicos

O modelo de demandas e recursos foi utilizado para identificar o poder preditivo do estilo pessoal do terapeuta e do trabalho emocional (demandas), e da inteligência emocional e autoeficácia profissional (recursos) sobre as dimensões da síndrome de Burnout (SB), em uma amostra de 240 psicólogos clínicos brasileiros. Os dados foram coletados por meio de plataforma online, tendo como instrumentos de pesquisa um Questionário de dados sociodemográficos e laborais, o Cuestionario para la Evaluación del Síndrome de Quemarse por el Trabajo, o Cuestionario del Estilo Personal del Terapeut, o Questionário de Avaliação Relacionado a Demandas Emocionais e Dissonância da Regra da Emoção, Medida de Inteligência Emocional, e Escala de Autoeficácia Geral Percebida. Os resultados obtidos revelaram um modelo preditor das dimensões da SB, constituído pelas variáveis dissonância emocional, automotivação, demandas emocionais, instrução, envolvimento e autoeficácia. Ressalta-se a relevância de estratégias voltadas para a prevenção da SB nessa categoria profissional, bem como a necessidade de ações que visem a promoção e o desenvolvimento da inteligência emocional e da autoeficácia como fortalecimento dos recursos emocionais para atuação na prática clínica.(AU)

The Model of Demands - Resources was used to identify the predictive power of therapist's personal style, emotional work (Demands), Emotional intelligence, and professional self-efficacy (Resources) over the Burnout syndrome dimensions in a sample of 240 Brazilian clinical psychologists. The data was collected by an on-line platform using a Labor and social demographic data questionnaire, a work Burnout Syndrome Evaluation questionnaire (CESQT - Cuestionario para la Evaluación del Síndrome de Quemarse por el Trabajo), the short version of the Therapist Personal Style Questionnaire (EPT-C Cuestionario del Estilo Personal del Terapeuta), an Evaluation questionnaire related to emotional demands and emotion rule dissonance, and the Emotional Intelligence Measure (EIM) and Perceived General Self-Efficacy Scale (GPSS) as research instruments. Results showed a predictor model of Burnout syndrome constituted by the variables Emotional dissonance, Self-motivation, Emotional demands, Instruction, Involvement, and Self-efficacy. We emphasize the relevance of strategies to prevent Burnout Syndrome in this professional category and the need for actions to promote and develop emotional intelligence and self-efficacy as a strengthening factor of the emotional resources to work as a clinical psychologist.(AU)

Se utilizó el modelo demandas y recursos para identificar el poder predictivo del estilo personal del terapeuta y del trabajo emocional (demandas), y de la inteligencia emocional y autoeficacia profesional (recursos) sobre las dimensiones del síndrome de Burnout (SB), en una muestra de 240 psicólogos clínicos brasileños. Los datos se recolectaron de una plataforma en línea, utilizando como instrumentos de investigación un cuestionario de datos sociodemográficos y laborales, el Cuestionario para la Evaluación del Síndrome de Quemarse por el Trabajo, el Cuestionario del Estilo Personal del Terapeuta, el Cuestionario de Evaluación Relacionado con Demandas Emocionales y Disonancia de la Regla de la Emoción, la Medida de Inteligencia Emocional y Escala de Autoeficacia General Percibida. Los resultados obtenidos revelaron un modelo predictor de las dimensiones de SB, constituido por las variables disonancia emocional, automotivación, exigencias emocionales, instrucción, implicación y autoeficacia. Se destaca la relevancia de las estrategias dirigidas a la prevención del SB en esta categoría profesional, así como la necesidad de acciones dirigidas a promover y desarrollar la inteligencia emocional y la autoeficacia como fortalecimiento de los recursos emocionales para trabajar en la práctica clínica.(AU)

Educational video for teaching safe practices in the perioperative period: randomized controlled trial / Video educativo para enseñanza de prácticas seguras en el perioperatorio: ensayo clínico aleatorizado / Vídeo educativo para ensino de práticas seguras no perioperatório: ensaio clínico randomizado

Objective: to assess the effectiveness of an educational video on hospitalized patients' knowledge of safe practices in the perioperative period. Method: randomized, double-blind controlled trial carried out in a teaching hospital in the countryside of Minas Gerais. 100 participants undergoing elective orthopaedic surgery were randomly allocated (50 participants in the experimental group and 50 participants in the control group). Patient knowledge was assessed using a questionnaire constructed by the researchers and validated by specialists, before and after the intervention (educational video) or standard guidelines were applied. Descriptive statistics were used for quantitative variables and Student's t-test for independent samples to analyze the mean difference in knowledge between the experimental and control groups (α = 0.05). Results: 100 participants took part in the study, 50 participants in the experimental group and 50 participants in the control group. The experimental group showed a significantly higher gain in knowledge (t =3.72 ±1.84; p<0.001) than the control group. Cohen's d was 1.22, indicating a large magnitude of the effect. Conclusion: the educational video was effective in improving patients' knowledge and can contribute to nurses in the practice of health education, optimizing time and disseminating knowledge about safe practices in the perioperative period. Brazilian Registry of Clinical Trials (REBEC): RBR-8x5mfq.

Objetivo: evaluar la efectividad de un video educativo en el conocimiento de pacientes hospitalizados sobre las prácticas seguras en el período perioperatorio. Método: ensayo clínico aleatorizado, doble ciego, realizado en un hospital docente en el interior de Minas Gerais. Se asignaron aleatoriamente 100 pacientes sometidos a cirugía ortopédica electiva (50 en el grupo experimental y 50 en el control). El conocimiento del paciente se evaluó mediante un cuestionario, construido por los investigadores y validado por especialistas, antes y después de la aplicación de la intervención (video educativo) o instrucciones estándar. Se adoptó estadística descriptiva para variables cuantitativas y prueba t de Student para muestras independientes en el análisis de la media de la diferencia de conocimiento entre los grupos experimental y control (α = 0,05). Resultados: participaron en el estudio 100 pacientes, 50 en el grupo experimental y 50 en el control. El grupo experimental mostró una ganancia de conocimiento significativamente superior ( t =3.72 ±1,84; p <0,001) al grupo control. Se obtuvo un d de Cohen de 1,22, indicando una gran magnitud del efecto. Conclusión: el video educativo fue efectivo en mejorar el conocimiento de los pacientes y puede contribuir con el enfermero, en la práctica de educación en salud, en la optimización del tiempo y en la difusión del conocimiento sobre las prácticas seguras en el perioperatorio. Registro Brasileño de Ensayos Clínicos (REBEC): RBR-8x5mfq.

Objetivo: avaliar a efetividade de um vídeo educativo no conhecimento de pacientes hospitalizados acerca das práticas seguras no período perioperatório. Método: ensaio clínico randomizado, duplo-cego, realizado em hospital de ensino no interior de Minas Gerais. Foram alocados aleatoriamente 100 pacientes submetidos à cirurgia ortopédica eletiva (50 no grupo experimental e 50 no controle). O conhecimento do paciente foi avaliado por meio de questionário, construído pelos pesquisadores e validado por especialistas, antes e após a aplicação da intervenção (vídeo educativo) ou orientações-padrão. Adotou-se estatística descritiva para variáveis quantitativas e teste t de Student para amostras independentes na análise da média da diferença do conhecimento entre os grupos experimental e controle (α = 0,05). Resultados: participaram do estudo 100 pacientes, 50 no grupo experimental e 50 no controle. O grupo experimental apresentou ganho de conhecimento significativamente superior ( t =3.72 ±1,84; p <0,001) ao grupo controle. Obteve-se d de Cohen de 1,22, indicando grande magnitude do efeito. Conclusão: o vídeo educativo foi efetivo na melhora do conhecimento dos pacientes e pode contribuir com o enfermeiro, na prática de educação em saúde, na otimização do tempo e na disseminação do conhecimento quanto às práticas seguras no perioperatório. Registro Brasileiro de Ensaios Clínicos (REBEC): RBR-8x5mfq.

Trilhas nômades nordestinas de cuidado entre GAM e redução de danos / Northeastern nomad care trails between GAM and harm reduction / Senderos nómados nordestinos de cuidado entre GAM y reducción de daños

O presente trabalho tem por objetivo cartografar as potencialidades do encontro entre a estratégia da Gestão Autônoma da Medicação (GAM) com a perspectiva ético-política da Redução de Danos, a partir da experiência de um grupo GAM no Centro de Atenção Psicossocial para Álcool e Outras Drogas (Caps-Ad) da cidade de Garanhuns-PE. Nos valemos de diários de campo produzidos durante o grupo e, depois, em retorno ao campo para atualização da experiência. Os diários auxiliaram na composição de narrativas de análise com foco nas práticas de cuidado de si e nos efeitos do grupo nas trajetórias dos atores envolvidos e do serviço. Conclui-se que a estratégia GAM enriquece e amplia o paradigma da Redução de Danos, potencializando o cuidado integral aos que usam drogas e gerando efeitos de autonomia e emancipação nas trajetórias de cuidado e vida. (AU)

The present work aims to map the potential of the clash between the Autonomous Medication Management (GAM) strategy with the ethical-political perspective of Harm Reduction, based on the experience of a GAM group at the Psychosocial Care Center for Alcoholand Others Drugs (Caps-Ad) in the city of Garanhuns-PE. We made use of field diaries produced during the group and, later, back in the field to update the experience. The diaries helped in the composition of analysis narratives focusing on Self-Care practices and on the effects of the group on the trajectories of the actors involved and on the service. It is concluded that the GAM strategy enriches and expands the Harm Reduction paradigm, enhancing comprehensive care for drug users and generating effects of autonomy and emancipation in care and life trajectories. (AU)

El presente trabajo tiene como objetivo mapear el potencial del encuentro entre la estrategia de Gestión Autónoma de Medicamentos (GAM) con la perspectiva ético-política de Reducción de Daños, a partir de la experiencia de un grupo GAM del Centro de Atención Psicosocial de Alcohol y Otras Drogas (Caps-Ad) en la ciudad de Garanhuns-PE. Hicimos uso de diarios de campo elaborados durante el grupo y, posteriormente, de vuelta en el campo para actualizar la experiencia. Los diarios ayudaron en la composición de narrativas de análisis centradas en las prácticas de autocuidado y en los efectos del grupo en las trayectorias de los actores involucrados y el servicio. Se concluye que la estrategia GAM enriquece y amplía el paradigma de Reducción de Daños, potenciando la atención integral a los usuarios de drogas y generando efectos de autonomía y emancipación en el cuidado y en las trayectorias de vida. (AU)

Mexican Americans agree to participate in longitudinal clinical research more than non-Hispanic whites.

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.

[Ethical aspects in the assent of adolescents to participate in research]. / Aspectos éticos en el asentimiento de los adolescentes para participar en investigaciones.

OBJECTIVE: to describe the ethical aspects to be considered in the consent of adolescents to participate in research. MATERIAL AND METHOD: A narrative review was conducted in the scientific databases PUBMED and BVS, between 2010-2021, the search was conducted in English, and MeSH and DeCS descriptors were used, obtaining a total sample of 12 articles selected for analysis. RESULTS: Age was commonly used instead of directly assessing the ability to understand the issues and make an informed decision about participating in research. This ability is influenced by age, context, and development. Adolescent decision-making is substantially different in the presence of peers. A balance is needed between recognizing the emerging autonomy in adolescents, their differential developmental rhythms, and their not yet fully mature response to personal risk. CONCLUSIONS: It is necessary to generate responses and strategies that safeguard both safety and respect for adolescents, focusing on the characteristics of both the age group and the individual, unifying valid mechanisms for determining the capacity to consent, integrating criteria from the sciences regarding cognition, maturation and development, psychology and ethics.

Exclusion of Families Who Speak Languages Other than English from Federally Funded Pediatric Trials.

OBJECTIVE: To determine whether individuals in the United States who speak languages other than English (LOE) are excluded from federally funded pediatric clinical trials and whether such trials adhere to the National Institutes of Health policy regarding inclusion of members of minority groups. STUDY DESIGN: Using ClinicalTrials.gov, we identified all completed, federally funded, US-based trials inclusive of children ≤17 and focused on one of 4 common chronic childhood conditions (asthma, mental health, obesity, and dental caries) as of June 18, 2019. We reviewed ClinicalTrials.gov online content, as well as published manuscripts linked to ClinicalTrials.gov entries, to abstract information about language-related exclusion criteria. Trials were deemed to exclude LOE participants/caregivers if explicit statements regarding exclusion were identified in the study protocol or published manuscript. RESULTS: Of total, 189 trials met inclusion criteria. Two-thirds (67%) did not address multilingual enrollment. Of the 62 trials that did, 82% excluded LOE individuals. No trials addressed the enrollment of non-English, non-Spanish-speaking individuals. In 93 trials with nonmissing data on ethnicity, Latino individuals comprised 31% of participants in trials that included LOE individuals and 14% of participants in trials that excluded LOE individuals. CONCLUSIONS: Federally funded pediatric trials in the United States do not adequately address multilingual enrollment, a seeming violation of federal and contractual requirements for accommodation of language barriers by entities receiving federal funding.