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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.
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INTRODUCTION: Patient adherence to maintenance medication is critical for improving clinical outcomes in asthma and is a recommended guiding factor for treatment strategy. Previously, the APPaRENT studies assessed patient and physician perspectives on asthma care; here, a post-hoc analysis aimed to identify patient factors associated with good adherence and treatment prescription patterns. METHODS: APPaRENT 1 and 2 were cross-sectional online surveys of 2866 adults with asthma and 1883 physicians across Argentina, Australia, Brazil, Canada, China, France, Italy, Mexico, and the Philippines in 2020-2021. Combined data assessed adherence to maintenance medication, treatment goals, use of asthma action plans, and physician treatment patterns and preferences. Multivariable logistic regression models assessed associations between patient characteristics and both treatment prescription (by physicians) and patient treatment adherence. RESULTS: Patient and physician assessments of treatment goals and adherence differed, as did reporting of short-acting ß2-agonist (SABA) prescriptions alongside maintenance and reliever therapy (MART). Older age and greater patient-reported severity and reliever use were associated with better adherence. Patient-reported prescription of SABA with MART was associated with household smoking, severe or poorly controlled asthma, and living in China or the Philippines. CONCLUSIONS: Results revealed an important disconnect between patient and physician treatment goals and treatment adherence, suggesting that strategies for improving patient adherence to maintenance medication are needed, focusing on younger patients with milder disease. High reliever use despite good adherence may indicate poor disease control. Personalised care considering patient characteristics alongside physician training in motivational communication and shared decision-making could improve patient management and outcomes.
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Asma , Adesão à Medicação , Humanos , Asma/tratamento farmacológico , Estudos Transversais , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Adesão à Medicação/estatística & dados numéricos , Filipinas , Médicos/psicologia , Efeitos Psicossociais da Doença , China , Austrália , Canadá , México , Agonistas de Receptores Adrenérgicos beta 2/uso terapêutico , Brasil , Argentina , Fatores Etários , Antiasmáticos/uso terapêutico , Padrões de Prática Médica , França , Inquéritos e Questionários , Cooperação e Adesão ao Tratamento/estatística & dados numéricos , ItáliaRESUMO
Objective: This study aimed to identify the information needs and factors for making informed treatment decisions among a diverse group of locally advanced cervical cancer (LACC) patients. Methods: Semi-structured interviews were conducted with LACC patients of diverse demographic and socioeconomic backgrounds within two years of their cancer diagnosis. Trained moderators asked open-ended questions about patients' cancer journeys. Transcripts were analyzed using NVivo software to identify emergent themes. Results: In 2022, 92 LACC patients in the United States (n = 26), Brazil (n = 25), China (n = 25), and Germany (n = 16) participated in the study. Physicians were valued sources of information, providing patients with details on prognosis, treatment options, and side effects. While most patients trusted their physicians, one-third sought a second opinion to validate their diagnosis or find a more trusted physician.Most patients conducted their own research on treatment options, side effects, causes of LACC, symptoms, and others' experiences. Challenges to information searches included understanding medical terms, finding relevant information, and evaluating source credibility.Overall, patients felt knowledgeable enough to participate in treatment decisions, either by accepting the recommended treatment or collaborating with their physicians. Nearly one-third of patients desired a more significant role in the decision-making process. Conclusion: This study highlights the importance of physicians providing LACC patients comprehensive and understandable information, while involving them in the decision-making process. Understanding LACC patients' motivations to seek information and their willingness to actively engage in treatment decisions can lead to improved patient satisfaction in their cancer care.
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Resumen La empatía, la comunicación efectiva y la asertividad en la práctica médica actual representan habilidades y herramientas necesarias y vigentes en un mundo de grandes avances y realidades tecnológicas que no superan, en nuestra perspectiva, lo indispensable para mantener y fortalecer la relación del profesional de la salud con el paciente, específicamente la relación médico-paciente. Es conveniente identificar y reconocer el hecho de que estas relaciones interpersonales deben ser modificadas mediante el reconocimiento de su bidireccionalidad y deben centrarse en un carácter educativo, de retroalimentación y atención mutua, con una mejora continua de la regla de las "15 C": comunicación, cercanía, comprensión, compasión, confianza, capacidad, consistencia, certificación, creatividad, cooperación/coordinación, compromiso bidireccional y conexión, con las resultantes calidad y calidez.
Abstract Empathy, effective communication and assertiveness in current medical practice represent skills and tools necessary and current, in a world of great advances and technological realities that do not surpass, in our perspective, the indispensable use of such tools to maintain and strengthen the relationship of the health professional with the patient and specifically of the doctor-patient relationship. It is convenient to identify and recognize the fact that these interpersonal relationships must be modified by recognizing their bidirectionality and that they should focus on an educational, feedback and mutual attention, with a continuous improvement of the "15 C" rule: communication, closeness, understanding, compassion, confidence, capacity, consistency, certification, creativity, cooperation/coordination and bidirectional commitment and connection, with the resulting quality and warmth.
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OBJECTIVE: To identify impacts of patient and family engagement in child health research on the research process, research teams, and patient and family partners. STUDY DESIGN: A scoping review was conducted using the MEDLINE, Embase, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, and Web of Science databases. English-language studies were included if they described ≥1 impact of patient and family engagement on child health research (age <18 years), researchers, or patient and family partners. Data were retrieved by 2 independent extractors. RESULTS: Of the 7688 studies identified, 25 were included in our analysis. Impacts of patient and family engagement were mostly on the research process (n = 24 studies; 96%), 11 (44%) determined impacts on the research team, and 17 (68%) reported impacts on patient and family partners. Less than one-half (n = 11; 44%) had a primary purpose of determining the impact of patient engagement, and no study used a specific evaluation tool. CONCLUSIONS: Patient and family engagement can strengthen the relevance and feasibility of research and empower researchers and patient partners. Measuring and reporting the impact of engagement is rare. Systematic and standardized evaluation of engagement is needed to understand how, when, and why to engage patients and families.
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Saúde da Criança , Participação do Paciente , Criança , Humanos , Adolescente , IdiomaRESUMO
Histórico -O tratamento de pacientes com lombalgia crônica (LC) em muitos países, incluindo o Brasil, é um grande desafio no nível de atendimento primário e especializado. Além disso, as informações sobre epidemiologia e tratamento de pacientes com LC são escassas. O objetivo principal desta revisão semi-sistemática foi a construção de evidências locais sobre a prevalência e o padrão de tratamento da LC. Métodos: Esta revisão semi-sistemática utilizou Medline, Embase e Biosis via plataforma Ovid e recursos adicionais (Google, Google Scholar, Banco de dados de incidência e prevalência, Organização Mundial da Saúde, Ministério da Saúde do Brasil e informações anedóticas de especialistas locais) para identificar literatura relevante entre 2002 e 2020 para mapear a jornada do paciente. Artigos de texto completos e originais do Brasil em inglês contendo dados sobre pontos de contato predefinidos na jornada do paciente (conscientização, triagem, diagnóstico, tratamento, adesão e controle) foram selecionados. Os dados foram obtidos usando uma média simples ou ponderada, conforme aplicável para os componentes da jornada do paciente. Resultados: De 297 registros, incluindo os fornecidos por especialistas locais, oito estudos foram incluídos para análise. A conscientização da LC e da LC-NeP foi de 30,4% e 12%, respetivamente. De acordo com estudos publicados, a adesão e o controle dos sintomas dos pacientes foram estimados com percentual semelhante de 38% e 18%, respetivamente para a LC e a LC-NeP. A prevalência de LC-NeP (3,6%) foi menor que a de LC (20,6%). Com exceção de uma porcentagem comparável da população tratada, para LC (39,1%) e LC-NeP (38%), a porcentagem de pontos de contato restantes foi maior no caso de LC do que no LC-NeP, o que implicava uma melhora no trajeto do paciente para a LC. Conclusão: O estudo destaca a necessidade de melhorar os resultados dos pacientes em nível nacional, medindo esses pontos de contato da jornada do paciente. O resultado deste estudo baseado em evidências é importante para preencher a lacuna de conhecimento do paciente com LC. Portanto, recomenda-se garantir a educação médica contínua, a conscientização do paciente e a restruturação do sistema de saúde brasileiro, ao mesmo tempo em que adota novas práticas sobre o gerenciamento da dor. [au]
Background: Managing patients with chronic low back pain (CLBP) in many countries, including Brazil, is a major challenge at the primary and specialty care level. Moreover, the information about epidemiology and patient management with CLBP is sparse. The primary objective of this semi-systematic review was to build local evidence about the prevalence and management pattern of CLBP. Methods: This semi-systematic review used Medline, Embase, and Biosis via Ovid the platform and additional resources (Google, Google Scholar, Incidence and Prevalence Database, World Health Organization, Brazilian Ministry of Health, and anecdotal information from local experts) to identify relevant literature between 20022020 to map the patient journey. Original full-text articles from Brazil in English containing data on pre-defined patient journey touchpoints (awareness, screening, diagnosis, treatment, adherence, and control) were screened. Data were synthesized using a simple or weighted mean, as applicable for patient journey components. Results. Of 297 records including those provided by local experts, eight studies were included for analysis. Awareness of CLBP and CLBP-NeP was 30.4% and 12%, respectively. According to published studies, adherence and symptoms control of patients was estimated with a similar percentage of 38% and 18%, respectively for CLBP and CLBP-NeP. CLBP-NeP prevalence (3.6%) was lower than that of CLBP (20.6%). Except for a comparable percentage of the treated population, for CLBP (39.1%) and CLBP-NeP (38%), the percentage of remaining touchpoints are higher in the case of CLBP than in CLBP-NeP, implying an improved patient journey for CLBP. Conclusion: The study highlights the usefulness to improve patient outcomes at the national level by measuring these mapping patient journey touchpoints. The outcome of this evidence-based study was fruitful to bridges the know-do gap in CLBP patients. Therefore, it is recommended to ensure continuing medical education, patient awareness, and health system preparedness while embracing the emerging insights on pain management. [au]
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Resumo: Introdução: Trata-se da elaboração de um manual sobre estratégias de engajamento do paciente e seu acompanhante na identificação do risco de queda e ações de prevenção de quedas em ambiente hospitalar, que faz parte do projeto "Difusão e adoção do programa Fall Tailoring Interventions for Patient Safety - Fall TIPS", que vem sendo desenvolvido em hospital universitário do sul do Brasil. Objetivo: a elaboração de manual sobre estratégias de engajamento do paciente e seu acompanhante em programas de prevenção de queda. Método: Trata-se de uma pesquisa do tipo qualitativa, exploratória, descritiva e de produção tecnológica, composta por duas fases: a) entrevistas com pacientes que apresentaram o evento adverso queda hospitalar durante internação hospitalar, e/ou com seus acompanhantes, analisadas a partir da técnica de análise de conteúdo; e b) produção tecnológica para a elaboração do manual. Resultados: Nas entrevistas realizadas foi possível observar a recorrência de alguns temas principais: "A gente não sabia: dificuldades e inquietações na percepção dos riscos"; "Medo e insegurança: o manejo emocional como ferramenta da clínica no risco de queda"; "Relação da equipe de saúde com os cuidadores como ferramenta de suporte ao engajamento do paciente", que subsidiaram a elaboração do manual. Os resultados evidenciam lacunas na efetividade da comunicação entre os envolvidos no processo de identificação de riscos e manejo das intervenções relacionadas a cuidados seguros e trazem sugestões para superação do desafio por parte dos profissionais da saúde, em desenvolver práticas mais colaborativas. Sem essa abordagem, o paciente desenvolve sentimentos de medo e insegurança, comprometendo o seu cuidado e segurança. Produto e registro: O "Manual sobre Estratégias de Engajamento em Programas de Prevenção de Quedas Hospitalares", registrado na Câmara Brasileira do Livro. Conclusão: O manual subsidia a adoção de estratégias de prevenção à ocorrência de quedas em ambiente hospitalar, levando em consideração a adesão de uma cultura de segurança que conduza a uma prática assistencial de qualidade e, consequentemente, à redução de quedas.
Abstract: Introduction: A manual on strategies for engaging patients and their companions in identifying the risk of falling and actions to prevent falls in the hospital environment was prepared, as a part of the project "Dissemination and adoption of the Fall Tailoring Interventions for program Patient Safety - Fall TIPS", that is being developed in a university hospital in southern Brazil. Objective: the development of a manual on patient and companion engagement strategies in fall prevention programs. Method: A qualitative, exploratory, descriptive and of technological production research was performed, consisting of two phases: a) interviews with patients (and/or their companions), who had experienced a fall during hospitalization. The content analysis technique was used; and b) the production/preparation of the manual. Results: In the interviews results, it was possible to observe the recurrence of the themes: "We didn't know: difficulties and concerns in the perception of risks"; "Fear and insecurity: emotional management as a clinical tool for managing the risk of falling"; "Relationship between the health team and caregivers as a support tool for patient engagement", which supported the preparation of the manual. Also, they showed gaps in communication effectiveness among those involved in the process of identifying risks and managing interventions related to safe care and bring suggestions for overcoming the challenge on the part of health professionals, in developing more collaborative practices. Without this approach, the patient develops feelings of fear and insecurity, compromising their care and safety. Product: The "Manual on Engagement Strategies in Hospital Fall Prevention Programs", it was registered at Câmara Brasileira do Livro. Conclusion: The manual supports the adoption of prevention strategies against the occurrence of falls in the hospital environment, taking into account the adherence of a safety culture that leads to a quality care practice and, consequently, to the reduction of falls.
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Humanos , Masculino , Feminino , Pré-Escolar , Adulto , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Pacientes , Acidentes por Quedas , Aceitação pelo Paciente de Cuidados de Saúde , Segurança do Paciente , Prevenção de Acidentes , Ambiente de Instituições de SaúdeRESUMO
BACKGROUND: Online spaced education (OSE) is a method recognized for promoting long-term knowledge retention, changing behaviors and improving outcomes for students and healthcare professionals. However, there is little evidence about its impacts on patient education. OBJECTIVES: The aim of this research was to compare knowledge retention using educational brochure and OSE on individuals with multiple sclerosis (MS) and to verify the impact of educational methods on fall outcome. METHODS: Individuals with MS (n = 230) were randomly assigned to two types of patient education-educational brochure (control) and OSE (intervention). During 12 weeks, the intervention group received multiple-choice tests on fall prevention. Knowledge retention, behavior change and fall incidence were assessed before intervention and after 3 and 6 months. The participants' satisfaction with the education method was also evaluated. RESULTS: Knowledge retention was similar between groups, and behavior change was observed in both groups. There was a significant reduction in fall rate in the intervention group, from 0.60 to 0.27 at 6 months (P < 0.001). Participants' satisfaction achieved an average of 8.75, with no differences between groups. CONCLUSION: Individuals demonstrated significant improvement in fall rate outcome in both groups with no significant difference. In regard to test scores and satisfaction, results were similar between groups.
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Acidentes por Quedas , Esclerose Múltipla , Acidentes por Quedas/prevenção & controle , Escolaridade , Pessoal de Saúde , Humanos , Incidência , Esclerose Múltipla/prevenção & controleRESUMO
Introdução: Potenciais riscos aos pacientes são intrínsecos à assistência à saúde, sendo que na maternidade, a ocorrência de eventos adversos pode repercutir em danos a mulher e ao recémnascido (RN). Diante disso, políticas públicas estabelecem ações de melhoria da assistência por meio da corresponsabilização e participação ativa dos pacientes e acompanhantes no cuidado e na prevenção de incidentes. Nesse contexto, a literatura sugere o desenvolvimento de tecnologias educativas (TE) para aperfeiçoar a comunicação, aumentar a capacidade de escuta e engajar o paciente e família na segurança do paciente (SP). Entretanto, as evidências sobre o desenvolvimento e utilização de TE em busca do maior envolvimento do acompanhante e do paciente na SP na maternidade, especialmente com a participação desses atores são insuficientes. Objetivos de pesquisa: Conhecer as percepções e as experiências de pacientes, acompanhantes e profissionais de saúde da maternidade sobre a participação da paciente e do acompanhante na segurança da paciente e do RN. Objetivo de prática: Elaborar e avaliar uma tecnologia educativa para promoção do envolvimento das pacientes internadas na maternidade e seus acompanhantes nas ações do cuidado seguro. Método: O estudo seguiu os preceitos metodológicos da Pesquisa Convergente-Assistencial e sustentou-se nos fundamentos teóricos de Paulo Freire. Foi realizado na maternidade de um hospital público de Belo Horizonte e a produção de dados foi dividida em três etapas. A primeira etapa subsidiou a construção da cartilha através de entrevistas para conhecer as percepções e o conhecimento dos participantes sobre a SP e a participação da paciente e do acompanhante na segurança; e identificar as barreiras que dificultam colocar em prática as ações de SP. Participaram dessa etapa 13 profissionais de saúde, 11 pacientes e 06 acompanhantes. Na segunda foi desenvolvida a TE em forma de cartilha e na terceira, a mesma foi avaliada pelos participantes. Na última etapa aceitaram continuar participando da pesquisa os 13 profissionais da saúde, 08 pacientes e 05 acompanhantes. A coleta de dados ocorreu por meio de entrevista semiestruturada e registro de diário de campo. A análise dos dados foi realizada pela análise de conteúdo e foram criadas duas categorias provenientes da primeira etapa: Saberes e experiências sobre a segurança da paciente e do RN na maternidade e Desafios para o envolvimento da paciente e acompanhante nas ações de segurança. Resultados: Na primeira categoria os achados evidenciaram que as pacientes e os acompanhantes esboçaram diferentes entendimentos sobre a SP, sendo que a maioria apresentava compreensão limitada sobre o tema e desconhecia como poderiam contribuir para SP. Os profissionais enfatizaram que as pacientes e os acompanhantes se envolvem pouco na SP e poderiam ser mais informados e estimulados pela própria equipe. A segunda categoria apontou as fragilidades para a participação da paciente e acompanhante nas ações de segurança, como a falta de conhecimento, diálogo e escuta, e a posição autoritária de alguns profissionais. Os achados da primeira etapa contribuíram para a construção da TE, no formato de cartilha. Na terceira etapa, os participantes avaliaram a TE como sendo um material importante para impulsionar a participação das pacientes e acompanhantes na SP. Conclusão: O processo interativo e dialogado com os participantes possibilitou a criação da TE como ferramenta importante no envolvimento das pacientes e acompanhantes nas ações de SP. Essa experiência vai ao encontro do pensamento de Paulo Freire que afirma que, o educador deve reconhecer o educando têm saberes, experiências e leituras de mundo próprias, sendo o respeito essencial para influenciar no desenvolvimento de novos saberes.
Potential risks to patients are intrinsic to health care, and in maternity hospitals, the occurrence of adverse events can affect women and newborns (NB). Therefore, public policies establish actions to improve care through co-responsibility and active participation of patients and caregivers in the care and prevention of incidents. In this context, the literature suggests the development of educational technologies (ET) to improve communication, increase listening skills and engage the patient and family in patient safety (PS). However, the evidence on the development and use of ET in search of greater involvement of the companion and the patient in PS in the maternity hospital, especially with the participation of these actors, is insufficient. Research objectives: Know the perceptions and experiences of patients, companions and health professionals in the maternity ward about the participation of the patient and companion in the safety of the patient and the NB. Practice objective Develop and evaluate an educational technology to promote the involvement of patients admitted to the maternity ward and their companions in safe care actions. Method: The study followed the methodological precepts of the Convergent Care Research and was supported by Paulo Freire's theoretical foundations. It was carried out in the maternity of a public hospital in Belo Horizonte and data production was divided into three stages. The first stage supported the construction of the booklet through interviews to learn about the participants' perceptions and knowledge about PS and the patient's and companion's participation in safety; and identify the barriers that make it difficult to put PS actions into practice. Thirteen health professionals, 11 patients and 06 caregivers participated in this stage. In the second, the ET was developed in the form of a booklet and in the third, it was evaluated by the participants. In the last stage, the 13 health professionals, 08 patients and 05 companions agreed to continue participating in the research. Data collection took place through semi-structured interviews and field diary records. Data analysis was performed using content analysis and two categories were created from the first stage: Knowledge and experiences about patient and newborn safety in the maternity ward and Challenges for the involvement of the patient and companion in safety actions. Results: In the first category, the findings showed that patients and caregivers outlined different understandings about PS, and most of them had limited understanding of the topic and did not know how they could contribute to PS. Professionals emphasized that patients and companions are little involved in PS and could be more informed and encouraged by the team itself. The second category pointed out the weaknesses for the participation of the patient and companion in safety actions, such as the lack of knowledge, dialogue and listening, and the authoritarian position of some professionals. The findings of the first stage contributed to the construction of the ET, in the form of a booklet. In the third stage, participants assessed ET as being an important material to boost the participation of patients and caregivers in the PS. Conclusion: The interactive process and dialogue with the participants enabled the creation of ET as an important tool in the involvement of patients and caregivers in PS actions. This experience is in line with the thought of Paulo Freire who states that the educator must recognize that the student has their own knowledge, experiences and readings of the world, with respect being essential to influence the development of new knowledge.
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Tecnologia Educacional , Segurança do Paciente , Maternidades , Participação do Paciente , Unidade Hospitalar de Ginecologia e Obstetrícia , Dissertação AcadêmicaRESUMO
INTRODUCTION: Discordance (misalignment) regarding treatment satisfaction may exist in real-life clinical practice between patients and their physicians. We aimed to assess physician and patient treatment satisfaction levels and associated degree of misalignment in rheumatoid arthritis (RA). METHOD: A point-in-time, multinational survey of patients and physicians was conducted in Latin America from December 2014 to October 2015. Physician- and patient-reported satisfaction levels with current RA treatment, alignment levels in satisfaction perception, and factors associated with satisfaction misalignment were assessed through bivariate and logistic regression analyses. RESULTS: Participating physicians (N = 114) completed 555 patient record forms (PRFs); 372 patients completed self-complete questionnaires (PSC). A total of 346 physician-patient pairs were analyzed. Physicians reported satisfaction with current disease control in 270/346 (78.0%) PRFs; patients reported such satisfaction in 286/346 (82.7%) PSCs. Physician-patient alignment was observed in 78.6% of pairs. Compared with aligned patients, misaligned patients were younger, more likely to have moderate or severe disease (physician subjectively defined), deteriorating or unstable disease (physician subjectively defined), been exposed to a greater number of advanced therapy lines (biologic or Janus kinase inhibitor), greater current pain, a current acute episode, poorer health, and greater disability and impairment. Misaligned patients were less likely to be in remission. Logistic regression analysis revealed that misaligned patients were more likely to experience greater activity impairment. CONCLUSIONS: High treatment satisfaction and alignment were observed among RA patients and their physicians in Latin America. Misaligned patients were more likely to report more severe disease and were less likely to be in remission. Addressing misalignment may lead to improved RA disease control.Key Points⢠High treatment satisfaction was observed among RA patients and their treating physicians in Latin America.⢠One-fifth of physician-patient pairs were misaligned in treatment satisfaction.⢠Patients misaligned with their physicians reported higher disease activity, lower quality of life, and greater disability than those who were aligned with their physicians.⢠Understanding and addressing misalignment in treatment satisfaction may improve outcomes in this patient population.
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Antirreumáticos/uso terapêutico , Artrite Reumatoide/tratamento farmacológico , Satisfação do Paciente , Relações Médico-Paciente , Adolescente , Adulto , Idoso , Estudos Transversais , Feminino , Humanos , América Latina , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Análise Multivariada , Qualidade de Vida , Indução de Remissão , Inquéritos e Questionários , Adulto JovemRESUMO
Patients with rare diseases across the world struggle to access timely diagnosis and state-of-the-art treatment and management of their conditions. Several recently published reviews highlight the importance of country efforts to address rare diseases and orphan drugs policy comprehensively. However, many of these reviews lack depth and detail at the local level, which we believe is necessary for rare disease advocates to identify and prioritize opportunities for strengthening each country's policy framework.We asked leading patient advocates from civil society organizations their views on rare disease public policy in Argentina, Brazil, Chile, Colombia, Mexico, and Peru with a focus on whether specific laws and regulations in these six Latin American countries have been promulgated. From December 2018 to March 2019 we supplemented their perspectives with evidence from accessible literature using key search terms. For each country, we prepared a detailed analysis on how laws or other policy initiatives took shape and the steps taken since to implement them. This allowed us to identify five broad policy categories for subsequent analysis: national laws, national regulations, health system incorporation of rare disease treatments, care delivery, and patient engagement.By describing the different approaches, challenges and timelines across six countries, our research demonstrates that strengthening rare disease policy first requires a common understanding and local consensus of each country's recent past and current situation. Subsequent analysis based on a set of common policy dimensions led us to where we believe salient opportunities lie for each of these countries to strengthen their overall policy framework for rare disease patients.
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Política Pública , Doenças Raras , Argentina , Brasil , Chile , Colômbia , Humanos , América Latina , México , PeruRESUMO
INTRODUCTION: Physician-patient misalignment may exist in real-life clinical practice. We aimed to assess physician and patient treatment satisfaction levels and associated degree of misalignment in psoriatic arthritis (PsA). METHOD: Data from a cross-sectional survey of patients and their physicians conducted in Latin America were analyzed. Physician-reported and patient-reported satisfaction levels with current PsA treatment, alignment in satisfaction levels, and factors associated with satisfaction misalignment were assessed through bivariable and multivariable regression analyses. RESULTS: A total of 179 physician-patient pairs were analyzed. Physicians reported satisfaction with current disease control in 87.7% (n = 157) of cases; patients reported satisfaction in 91.1% (n = 163 of cases). A total of 82.1% of physician-patient pairs were aligned. Compared with aligned patients, misaligned patients were older and more likely to have moderate or severe disease, deteriorating or unstable disease, a past hospital procedure, current or past psoriasis symptoms, greater current pain, a current acute episode, poorer health and quality of life, greater impairment, poorer medication compliance, to consider PsA a major daily burden, and to believe that PsA treatments were ineffective. Misaligned patients were less likely to be in remission. Logistic regression analysis revealed that misaligned patients were older, and more likely to consider PsA a major daily burden and PsA treatments as ineffective. CONCLUSIONS: High levels of treatment satisfaction and alignment were observed among PsA patients and their physicians in Latin America. Patients in this study nevertheless experienced a considerable clinical and quality-of-life burden, especially the misaligned patients. Addressing misalignment may lead to improved PsA disease control.Key points⢠High treatment satisfaction was observed among PsA patients and their treating physicians in Latin America.⢠Patients experienced a considerable clinical and quality-of-life burden, especially the misaligned patients.⢠One-fifth of physician-patient pairs were misaligned regarding satisfaction.⢠Understanding and addressing misalignment may improve outcomes in this patient population.
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Antirreumáticos/uso terapêutico , Artrite Psoriásica/tratamento farmacológico , Satisfação do Paciente , Relações Médico-Paciente , Adolescente , Adulto , Idoso , Estudos Transversais , Feminino , Humanos , América Latina , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Indução de Remissão , Índice de Gravidade de Doença , Adulto JovemRESUMO
OBJECTIVES: To analyze activities involving veteran resource parents and patients in a family partnership program; their perspectives were also explored. STUDY DESIGN: The multiple roles assumed by family stakeholders in neonatal initiatives were reviewed. Quality control questionnaires were distributed to resource parents and patients and providers who worked with them. Mixed methods were used to analyze results. RESULTS: Thirty resource parents and patients were involved in a total of 653 activities related to clinical care (n = 413), teaching (n = 31), and research (n = 209); 7 initiatives were described to illustrate the positive impact of family stakeholders on clinical care, teaching, and/or research. Resource parents and patients had different degrees and intensity of involvement: all were involved in low-risk initiatives and 9 in more complex activities. In the questionnaire, family stakeholders all described positive impacts associated with their participation and benefits to themselves, such as meaning making. Three resource parents reported traumatic memories that occurred during medical simulations. The majority of providers report that resource parents and patients improved their projects, but some also report this new collaboration is complex. CONCLUSIONS: Although stakeholder participation increasingly is recommended, practical knowledge and the impact of their participation is scarce. Having several resource parents and patients bring their contributions may be more valuable than a few "expert stakeholders." Recruiting and orienting resource parents and patients toward different types of activities should take into account the complexity and risks of the tasks. Family stakeholders are appreciated and have a positive impact on projects in which they are involved.
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Pesquisa Comparativa da Efetividade/métodos , Educação Médica/normas , Pesquisa sobre Serviços de Saúde/normas , Unidades de Terapia Intensiva Neonatal/organização & administração , Neonatologia/organização & administração , Avaliação de Resultados da Assistência ao Paciente , Participação dos Interessados , Pesquisa sobre Serviços de Saúde/economia , Humanos , Recém-Nascido , Neonatologia/educação , Quebeque , Estudos RetrospectivosRESUMO
PURPOSE: Self-management support (SMS) is a pillar of the well-established chronic care model and a key component of improving outcomes for patients with chronic illnesses. The Implementing Networks' Self-management Tools Through Engaging Patients and Practices (INSTTEPP) trial sought to determine whether a boot camp translation process could assist small to medium-sized primary care practices with care managers implement SMS tools. METHODS: INSTTEPP used a stepped-wedge design across 16 practices from 4 practice-based research networks over 12 months. Each network completed a 2-month boot camp translation for creating SMS tools with 16 participants (2 patients, a clinician, and a care manager from each of 4 practices) and subsequent implementation. Outcome measures for patients were the Patient Activation Measure (PAM), self-rated health, and Patient Assessment of Chronic Illness Care (PACIC) process-of-care items at baseline, 1 and 2 months. Clinician Support for Patient Activation Measure (CS-PAM) and theory of planned behavior outcomes were assessed at 5 points over 10 months for clinicians and staff. RESULTS: A total of 297 patients and 89 practice staff and clinicians completed surveys during the study. Over successive 2-month sampling periods, intervention patients experienced greater improvement in PACIC process of care and self-rated health compared to control patients (P<0.0001 and P=0.0273, respectively). PAM (P=0.3515), CS-PAM (P=0.7464), and theory of planned behavior outcomes (P>0.10 for all) were not significantly different. CONCLUSIONS: Significant effects on process of care and self-rated health are evidence that the boot camp translation intervention impacted SMS. A larger trial with a typical 6-month boot camp intervention may show significant effects on other outcomes.
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Addressing patient health and care behaviors that underlie much of chronic disease continues to challenge providers, medical practices, health systems, and insurers. Improving health and care as described by the Quadruple Aim requires innovation at the front lines of clinical care: the doctor-patient interaction and office practice. This article describes the use of Lean Six Sigma in a quality improvement (QI) effort to design an effective and scalable method for physicians to prescribe health coaching for healthy behaviors in a primary care medical home within a large integrated delivery and financing system. Building on the national Agency for Healthcare Research and Quality and Robert Wood Johnson Foundation-funded Prescription for Health multisite demonstration, this QI case study provides important lessons for transforming patient-physician-practice support systems to better address lifestyle and care management challenges critical to producing better outcomes.
Assuntos
Comportamentos Relacionados com a Saúde , Promoção da Saúde/organização & administração , Participação do Paciente/métodos , Atenção Primária à Saúde/organização & administração , Melhoria de Qualidade/organização & administração , Gestão da Qualidade Total/organização & administração , Registros Eletrônicos de Saúde , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Capacitação em Serviço , Estudos de Casos Organizacionais , Assistência Centrada no Paciente/organização & administração , Fatores de Tempo , Estados Unidos , United States Agency for Healthcare Research and QualityRESUMO
BACKGROUND: Uncontrolled asthma is a common highly morbid condition with worse outcomes in low-income and minority patients in part due to barriers accessing and engaging with health care. We developed a patient advocate to educate about and assist with navigating access to care and provider-patient communication. Participants completed an End of Study Questionnaire (ESQ) that was analyzed to assess experience and engagement with the protocol. OBJECTIVE: This study uses qualitative analysis to evaluate participant experience with the patient advocate and control group interventions. METHODS: The ESQ aimed to prompt an open-ended discussion of study experience. Questions were developed from patient focus groups about the patient advocate intervention (PAI), and were revised based on early responses. The questionnaire was administered after 12 months of study participation: 6 months of control or PAI, followed by 6 months of follow-up. Answers were evaluated using qualitative coding and a grounded theory analytical approach. RESULTS: A total of 102 low-income and minority adults with moderate or severe asthma who had completed the study protocol at the time of publication (approximately one-third of total participants) found PAI and control group activities acceptable. Four themes emerged from both groups: (1) appreciation of interpersonal and educational interaction, (2) perception of improved health care adherence, (3) preparedness for physician appointments, (4) improved patient-provider communication. Attention from study personnel and review of asthma-related information was unanimously well received and empowered patients' active health care participation. CONCLUSIONS: Patient engagement and empowerment were elicited by perceived education and personal attention. This study suggests a low-resource, feasible method to improve patient engagement.
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Asma/epidemiologia , Defesa do Paciente , Pobreza , População Urbana , Adulto , Asma/prevenção & controle , Feminino , Seguimentos , Acessibilidade aos Serviços de Saúde , Humanos , Masculino , Educação de Pacientes como Assunto , Participação do Paciente , Assistência Centrada no Paciente , Relações Médico-Paciente , Inquéritos e QuestionáriosRESUMO
BACKGROUND AND AIMS: We used data from the Continuing to Confront COPD International Patient Survey to test the hypothesis that patients with COPD who report less engagement with their disease management are also more likely to report greater impact of the disease. METHODS: This was a population-based, cross-sectional survey of 4,343 subjects aged ≥40 years from 12 countries, fulfilling a case definition of COPD based on self-reported physician diagnosis or symptomatology. The impact of COPD was measured with COPD Assessment Test, modified Medical Research Council Dyspnea Scale, and hospital admissions and emergency department visits for COPD in the prior year. The 13-item Patient Activation Measure (PAM-13) instrument and the 8-item Morisky Medication Adherence Scale (MMAS-8) were used to measure patient disease engagement and medication adherence, respectively. RESULTS: Twenty-eight percent of subjects reported being either disengaged or struggling with their disease (low engagement: PAM-13 levels 1 and 2), and 35% reported poor adherence (MMAS-8 <6). In univariate analyses, lower PAM-13 and MMAS-8 scores were significantly associated with poorer COPD-specific health status, greater breathlessness and lower BMI (PAM-13 only), less satisfaction with their doctor's management of COPD, and more emergency department visits. In multivariate regression models, poor satisfaction with their doctor's management of COPD was significantly associated with both low PAM-13 and MMAS-8 scores; low PAM-13 scores were additionally independently associated with higher COPD Assessment Test and modified Medical Research Council scores and low BMI (underweight). CONCLUSION: Poor patient engagement and medication adherence are frequent and associated with worse COPD-specific health status, higher health care utilization, and lower satisfaction with health care providers. More research will be needed to better understand what factors can be modified to improve medication adherence and patient engagement.
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Comportamentos Relacionados com a Saúde , Conhecimentos, Atitudes e Prática em Saúde , Pulmão/fisiopatologia , Participação do Paciente , Doença Pulmonar Obstrutiva Crônica/psicologia , Autocuidado , Adulto , Idoso , Brasil , Broncodilatadores/uso terapêutico , Distribuição de Qui-Quadrado , Estudos Transversais , Progressão da Doença , Serviço Hospitalar de Emergência , Europa (Continente) , Feminino , Pesquisas sobre Atenção à Saúde , Nível de Saúde , Humanos , Modelos Logísticos , Pulmão/efeitos dos fármacos , Masculino , Adesão à Medicação , México , Pessoa de Meia-Idade , Análise Multivariada , Razão de Chances , Admissão do Paciente , Satisfação do Paciente , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Doença Pulmonar Obstrutiva Crônica/fisiopatologia , Doença Pulmonar Obstrutiva Crônica/terapia , República da Coreia , Fatores de Risco , Índice de Gravidade de Doença , Inquéritos e Questionários , Fatores de Tempo , Resultado do Tratamento , Estados UnidosRESUMO
Background: There is a vast body of literature on deliberative, participative, or engaged democracy. In the area of health care there is a rapidly expanding literature on deliberative democracy as embodied in various notions of public engagement, shared decision-making (SDM), patient-centered care, and patient/care provider autonomy over the past few decades. It is useful to review such literature to get a sense of the challenges and prospects of introducing deliberative democracy in health care. Objective: This paper reviews the key literature on deliberative democracy and SDM in health care settings with a focus on identifying the main challenges of promoting this approach in health care, and recognizing its progress so far for mapping out its future prospects in the context of advanced countries. Method: Several databases were searched to identify the literature pertinent to the subject of this study. A total of 56 key studies in English were identified and reviewed carefully for indications and evidence of challenges and/or promising avenues of promoting deliberative democracy in health care. Results: Time pressure, lack of financial motivation, entrenched professional interests, informational imbalance, practical feasibility, cost, diversity of decisions, and contextual factors are noted as the main challenges. As for the prospects, greater clarity on conception of public engagement and policy objectives, real commitment of the authorities to public input, documenting evidence of the effectiveness of public involvement, development of patient decision supports, training of health professionals in SDM, and use of multiple and flexible methods of engagement leadership suited to specific contexts are the main findings in the reviewed literature. Conclusion: Seeking deliberative democracy in health care is both challenging and rewarding. The challenges have been more or less identified. However, its prospects are potentially significant. Such prospects are more likely to materialize if deliberative democracy is pursued more systematically in the broader sociopolitical domains. (AU)