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1.
N Engl J Med ; 388(12): 1101-1110, 2023 Mar 23.
Artigo em Inglês | MEDLINE | ID: mdl-36947467

RESUMO

BACKGROUND: Despite widespread adoption of surveillance testing for coronavirus disease 2019 (Covid-19) among staff members in skilled nursing facilities, evidence is limited regarding its relationship with outcomes among facility residents. METHODS: Using data obtained from 2020 to 2022, we performed a retrospective cohort study of testing for severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) among staff members in 13,424 skilled nursing facilities during three pandemic periods: before vaccine approval, before the B.1.1.529 (omicron) variant wave, and during the omicron wave. We assessed staff testing volumes during weeks without Covid-19 cases relative to other skilled nursing facilities in the same county, along with Covid-19 cases and deaths among residents during potential outbreaks (defined as the occurrence of a case after 2 weeks with no cases). We reported adjusted differences in outcomes between high-testing facilities (90th percentile of test volume) and low-testing facilities (10th percentile). The two primary outcomes were the weekly cumulative number of Covid-19 cases and related deaths among residents during potential outbreaks. RESULTS: During the overall study period, 519.7 cases of Covid-19 per 100 potential outbreaks were reported among residents of high-testing facilities as compared with 591.2 cases among residents of low-testing facilities (adjusted difference, -71.5; 95% confidence interval [CI], -91.3 to -51.6). During the same period, 42.7 deaths per 100 potential outbreaks occurred in high-testing facilities as compared with 49.8 deaths in low-testing facilities (adjusted difference, -7.1; 95% CI, -11.0 to -3.2). Before vaccine availability, high- and low-testing facilities had 759.9 cases and 1060.2 cases, respectively, per 100 potential outbreaks (adjusted difference, -300.3; 95% CI, -377.1 to -223.5), along with 125.2 and 166.8 deaths (adjusted difference, -41.6; 95% CI, -57.8 to -25.5). Before the omicron wave, the numbers of cases and deaths were similar in high- and low-testing facilities; during the omicron wave, high-testing facilities had fewer cases among residents, but deaths were similar in the two groups. CONCLUSIONS: Greater surveillance testing of staff members at skilled nursing facilities was associated with clinically meaningful reductions in Covid-19 cases and deaths among residents, particularly before vaccine availability.


Assuntos
COVID-19 , Surtos de Doenças , Pessoal de Saúde , Vigilância da População , Instituições de Cuidados Especializados de Enfermagem , Humanos , COVID-19/diagnóstico , COVID-19/epidemiologia , COVID-19/mortalidade , COVID-19/prevenção & controle , Surtos de Doenças/prevenção & controle , Surtos de Doenças/estatística & dados numéricos , Estudos Retrospectivos , SARS-CoV-2 , Instituições de Cuidados Especializados de Enfermagem/normas , Instituições de Cuidados Especializados de Enfermagem/estatística & dados numéricos , Pessoal de Saúde/normas , Pessoal de Saúde/estatística & dados numéricos , Vigilância da População/métodos , Pacientes/estatística & dados numéricos , Pandemias/prevenção & controle , Pandemias/estatística & dados numéricos
2.
Nature ; 582(7813): 557-560, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32340022

RESUMO

The ongoing outbreak of coronavirus disease 2019 (COVID-19) has spread rapidly on a global scale. Although it is clear that severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) is transmitted through human respiratory droplets and direct contact, the potential for aerosol transmission is poorly understood1-3. Here we investigated the aerodynamic nature of SARS-CoV-2 by measuring viral RNA in aerosols in different areas of two Wuhan hospitals during the outbreak of COVID-19 in February and March 2020. The concentration of SARS-CoV-2 RNA in aerosols that was detected in isolation wards and ventilated patient rooms was very low, but it was higher in the toilet areas used by the patients. Levels of airborne SARS-CoV-2 RNA in the most public areas was undetectable, except in two areas that were prone to crowding; this increase was possibly due to individuals infected with SARS-CoV-2 in the crowd. We found that some medical staff areas initially had high concentrations of viral RNA with aerosol size distributions that showed peaks in the submicrometre and/or supermicrometre regions; however, these levels were reduced to undetectable levels after implementation of rigorous sanitization procedures. Although we have not established the infectivity of the virus detected in these hospital areas, we propose that SARS-CoV-2 may have the potential to be transmitted through aerosols. Our results indicate that room ventilation, open space, sanitization of protective apparel, and proper use and disinfection of toilet areas can effectively limit the concentration of SARS-CoV-2 RNA in aerosols. Future work should explore the infectivity of aerosolized virus.


Assuntos
Aerossóis/análise , Aerossóis/química , Aparelho Sanitário , Betacoronavirus/isolamento & purificação , Infecções por Coronavirus/virologia , Hospitais , Pneumonia Viral/virologia , Local de Trabalho , Betacoronavirus/genética , COVID-19 , China/epidemiologia , Infecções por Coronavirus/epidemiologia , Infecções por Coronavirus/prevenção & controle , Infecções por Coronavirus/transmissão , Aglomeração , Desinfecção , Humanos , Unidades de Terapia Intensiva , Máscaras , Corpo Clínico , Pandemias/prevenção & controle , Pacientes/estatística & dados numéricos , Pneumonia Viral/epidemiologia , Pneumonia Viral/prevenção & controle , Pneumonia Viral/transmissão , RNA Viral/análise , SARS-CoV-2 , Isolamento Social , Ventilação
3.
Proc Natl Acad Sci U S A ; 120(35): e2303370120, 2023 08 29.
Artigo em Inglês | MEDLINE | ID: mdl-37607231

RESUMO

The use of race measures in clinical prediction models is contentious. We seek to inform the discourse by evaluating the inclusion of race in probabilistic predictions of illness that support clinical decision making. Adopting a static utilitarian framework to formalize social welfare, we show that patients of all races benefit when clinical decisions are jointly guided by patient race and other observable covariates. Similar conclusions emerge when the model is extended to a two-period setting where prevention activities target systemic drivers of disease. We also discuss non-utilitarian concepts that have been proposed to guide allocation of health care resources.


Assuntos
Tomada de Decisão Clínica , Pacientes , Humanos , Tomada de Decisões
4.
Blood ; 142(15): 1263-1270, 2023 Oct 12.
Artigo em Inglês | MEDLINE | ID: mdl-37540818

RESUMO

Manufacturing capacity and institutional infrastructure to deliver chimeric antigen receptor T-cell therapies (CAR-T) are pressured to keep pace with the growing number of approved products and expanding eligible patient population for this potentially life-saving therapy. Consequently, many cell therapy programs must make difficult decisions about which patient should get the next available treatment slot. This situation requires an ethical framework to ensure fair and equitable decision-making. In this perspective, we discuss the application of Accountability for Reasonableness (A4R), a priority-setting framework grounded in procedural justice, to the problem of limited CAR-T slots at our institution. We formed a multidisciplinary working group spanning several hematological malignancies. Through multiple rounds of partner engagement, we used A4R guiding principles to identify 4 main criteria to prioritize patients for CAR-T: medical benefit, safety/risk of complications, psychosocial factors, and medical urgency. Associated measures/tools and an implementation process were developed. We discuss further how ethical principles of fairness and equity demand a consistent approach within health systems that does not disadvantage medically underserved or underrepresented populations and supports overcoming barriers to care. In our commitment to transparency and collaboration, we make our tools available to others, ideally to be used to engage in their own A4R process, adapting the tools to their unique environments. Our hope is that our preliminary work will support the advancement of further study in this area globally, aiming for justice in resource allocation for all potential CAR-T candidates, wherever they may seek care.


Assuntos
Prioridades em Saúde , Receptores de Antígenos Quiméricos , Humanos , Imunoterapia Adotiva , Pacientes
8.
Proc Natl Acad Sci U S A ; 119(16): e2118210119, 2022 04 19.
Artigo em Inglês | MEDLINE | ID: mdl-35412913

RESUMO

The improving access to increasing amounts of biomedical data provides completely new chances for advanced patient stratification and disease subtyping strategies. This requires computational tools that produce uniformly robust results across highly heterogeneous molecular data. Unsupervised machine learning methodologies are able to discover de novo patterns in such data. Biclustering is especially suited by simultaneously identifying sample groups and corresponding feature sets across heterogeneous omics data. The performance of available biclustering algorithms heavily depends on individual parameterization and varies with their application. Here, we developed MoSBi (molecular signature identification using biclustering), an automated multialgorithm ensemble approach that integrates results utilizing an error model-supported similarity network. We systematically evaluated the performance of 11 available and established biclustering algorithms together with MoSBi. For this, we used transcriptomics, proteomics, and metabolomics data, as well as synthetic datasets covering various data properties. Profiting from multialgorithm integration, MoSBi identified robust group and disease-specific signatures across all scenarios, overcoming single algorithm specificities. Furthermore, we developed a scalable network-based visualization of bicluster communities that supports biological hypothesis generation. MoSBi is available as an R package and web service to make automated biclustering analysis accessible for application in molecular sample stratification.


Assuntos
Doença , Perfilação da Expressão Gênica , Metabolômica , Pacientes , Proteômica , Software , Algoritmos , Análise por Conglomerados , Doença/classificação , Humanos , Pacientes/classificação
9.
Proc Natl Acad Sci U S A ; 119(27): e2007717119, 2022 07 05.
Artigo em Inglês | MEDLINE | ID: mdl-35749352

RESUMO

The healthcare workforce in the United States is becoming increasingly diverse, gradually shifting society away from the historical overrepresentation of White men among physicians. However, given the long-standing underrepresentation of people of color and women in the medical field, patients may still associate the concept of doctors with White men and may be physiologically less responsive to treatment administered by providers from other backgrounds. To investigate this, we varied the race and gender of the provider from which White patients received identical treatment for allergic reactions and measured patients' improvement in response to this treatment, thus isolating how a provider's demographic characteristics shape physical responses to healthcare. A total of 187 White patients experiencing a laboratory-induced allergic reaction interacted with a healthcare provider who applied a treatment cream and told them it would relieve their allergic reaction. Unbeknownst to the patients, the cream was inert (an unscented lotion) and interactions were completely standardized except for the provider's race and gender. Patients were randomly assigned to interact with a provider who was a man or a woman and Asian, Black, or White. A fully blinded research assistant measured the change in the size of patients' allergic reaction after cream administration. Results indicated that White patients showed a weaker response to the standardized treatment over time when it was administered by women or Black providers. We explore several potential explanations for these varied physiological treatment responses and discuss the implications of problematic race and gender dynamics that can endure "under the skin," even for those who aim to be bias free.


Assuntos
Atenção à Saúde , Pacientes , Relações Médico-Paciente , Fatores Raciais , População Branca , Atenção à Saúde/etnologia , Feminino , Humanos , Hipersensibilidade/terapia , Masculino , Pomadas/administração & dosagem , Pacientes/psicologia , Médicos , Fatores Sexuais , Estados Unidos , População Branca/psicologia
10.
Ann Intern Med ; 177(2): JC22, 2024 02.
Artigo em Inglês | MEDLINE | ID: mdl-38315999

RESUMO

SOURCE CITATION: Alexander M, Harris S, Underhill C, et al. Risk-directed ambulatory thromboprophylaxis in lung and gastrointestinal cancers: the TARGET-TP randomized clinical trial. JAMA Oncol. 2023;9:1536-1545. 37733336.


Assuntos
Neoplasias , Tromboembolia Venosa , Humanos , Anticoagulantes/uso terapêutico , Neoplasias/complicações , Neoplasias/tratamento farmacológico , Pacientes , Medição de Risco , Tromboembolia Venosa/tratamento farmacológico , Ensaios Clínicos Controlados Aleatórios como Assunto
11.
BMC Bioinformatics ; 25(1): 34, 2024 Jan 22.
Artigo em Inglês | MEDLINE | ID: mdl-38254011

RESUMO

BACKGROUND: Driver genes play a vital role in the development of cancer. Identifying driver genes is critical for diagnosing and understanding cancer. However, challenges remain in identifying personalized driver genes due to tumor heterogeneity of cancer. Although many computational methods have been developed to solve this problem, few efforts have been undertaken to explore gene-patient associations to identify personalized driver genes. RESULTS: Here we propose a method called LPDriver to identify personalized cancer driver genes by employing linear neighborhood propagation model on individual genetic data. LPDriver builds personalized gene network based on the genetic data of individual patients, extracts the gene-patient associations from the bipartite graph of the personalized gene network and utilizes a linear neighborhood propagation model to mine gene-patient associations to detect personalized driver genes. The experimental results demonstrate that as compared to the existing methods, our method shows competitive performance and can predict cancer driver genes in a more accurate way. Furthermore, these results also show that besides revealing novel driver genes that have been reported to be related with cancer, LPDriver is also able to identify personalized cancer driver genes for individual patients by their network characteristics even if the mutation data of genes are hidden. CONCLUSIONS: LPDriver can provide an effective approach to predict personalized cancer driver genes, which could promote the diagnosis and treatment of cancer. The source code and data are freely available at https://github.com/hyr0771/LPDriver .


Assuntos
Neoplasias , Oncogenes , Humanos , Mutação , Redes Reguladoras de Genes , Modelos Lineares , Pacientes , Neoplasias/genética
12.
Ann Surg ; 279(3): 443-449, 2024 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-37800351

RESUMO

OBJECTIVE: To assess associations between social determinants of health (SDOH) needs and health-related quality of life (HRQOL) among surgical patients. BACKGROUND: Despite the profound impact of SDOH on health outcomes, studies examining the effect of SDOH needs on HRQOL among surgical patients are limited. METHODS: A retrospective study was conducted using responses from the SDOH needs assessment and the Patient-Reported Outcomes Measurement Information Systems Global Health instrument of adults seen in surgical clinics at a single institution. Patient characteristics including socioeconomic status (insurance type, education level, and employment status) were extracted. Stepwise multivariable logistic regression analyses were performed to identify independent predictors of global health scores. RESULTS: A total of 8512 surgical patients (mean age: 55.6±15.8 years) were included. 25.2% of patients reported one or more SDOH needs. The likelihood of reporting at least one SDOH need varied by patient characteristics and socioeconomic status variables. In fully adjusted regression models, food insecurity [odds ratio (OR), 1.53; 95% CI, 1.38-1.70 and OR, 1.49; 95% CI, 1.22-1.81, respectively], housing instability (OR, 1.27; 95% CI, 1.12-1.43 and OR, 1.39; 95% CI, 1.13-1.70, respectively) lack of transportation (OR, 1.46; 95% CI, 1.27-1.68 and OR, 1.25; 95% CI, 1.00-1.57, respectively), and unmet medication needs (OR, 1.31; 95% CI, 1.13-1.52 and OR, 1.61; 95% CI, 1.28-2.03, respectively) were independent predictors of poor physical and mental health. CONCLUSIONS: SDOH needs are independent predictors of poor patient-reported physical and mental health among surgical patients. Assessing and addressing SDOH needs should be prioritized in health care settings and by policymakers to improve HRQOL.


Assuntos
Qualidade de Vida , Determinantes Sociais da Saúde , Adulto , Humanos , Pessoa de Meia-Idade , Idoso , Estudos Retrospectivos , Pacientes , Razão de Chances
13.
J Clin Immunol ; 44(3): 61, 2024 Feb 16.
Artigo em Inglês | MEDLINE | ID: mdl-38363452

RESUMO

Human inborn errors of immunity (IEI) comprise a group of diseases resulting from molecular variants that compromise innate and adaptive immunity. Clinical features of IEI patients are dominated by susceptibility to a spectrum of infectious diseases, as well as autoimmune, autoinflammatory, allergic, and malignant phenotypes that usually appear in childhood, which is when the diagnosis is typically made. However, some IEI patients are identified in adulthood due to symptomatic delay of the disease or other reasons that prevent the request for a molecular study. The application of next-generation sequencing (NGS) as a diagnostic technique has given rise to an ever-increasing identification of IEI-monogenic causes, thus improving the diagnostic yield and facilitating the possibility of personalized treatment. This work was a retrospective study of 173 adults with IEI suspicion that were sequenced between 2005 and 2023. Sanger, targeted gene-panel, and whole exome sequencing were used for molecular diagnosis. Disease-causing variants were identified in 44 of 173 (25.43%) patients. The clinical phenotype of these 44 patients was mostly related to infection susceptibility (63.64%). An enrichment of immune dysregulation diseases was found when cohorts with molecular diagnosis were compared to those without. Immune dysregulation disorders, group 4 from the International Union of Immunological Societies Expert Committee (IUIS), were the most prevalent among these adult patients. Immune dysregulation as a new item in the Jeffrey Model Foundation warning signs for adults significantly increases the sensitivity for the identification of patients with an IEI-producing molecular defect.


Assuntos
Doenças do Sistema Imunitário , Adulto , Humanos , Estudos Retrospectivos , Doenças do Sistema Imunitário/diagnóstico , Doenças do Sistema Imunitário/genética , Imunidade Adaptativa , Sequenciamento de Nucleotídeos em Larga Escala , Pacientes
14.
Clin Gastroenterol Hepatol ; 22(4): 886-889.e5, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37716618

RESUMO

Nonalcoholic fatty liver disease (NAFLD) is an increasing global health problem and is expected to become the leading indication for liver transplantation.1 There are no approved NAFLD-specific pharmacotherapies, and lifestyle modification is the primary recommended therapy.2 Innovative approaches to facilitate the implementation and long-term maintenance of lifestyle changes are needed to address the challenging and complex nature of the management of NAFLD, which recently was renamed as metabolic dysfunction-associated steatotic liver disease, to overcome the limitations and stigma of the previous name.3,4 Artificial intelligence (AI)-powered chatbots have been shown to provide effective personalized support and education to patients, with the potential to complement health care resources. The OpenAI Foundation's AI chatbot, Chat Generative Pretrained Transformer (ChatGPT), has attracted worldwide attention for its remarkable performance in question-answer tasks.5-7 This study evaluated the accuracy, completeness, and comprehensiveness of chatGPT's responses to NAFLD-related questions, with the aim of assessing its performance in addressing patients' queries about the disease and lifestyle behaviors.


Assuntos
Hepatopatia Gordurosa não Alcoólica , Humanos , Hepatopatia Gordurosa não Alcoólica/terapia , Inteligência Artificial , Reprodutibilidade dos Testes , Pacientes , Terapia Comportamental
15.
BMC Med ; 22(1): 102, 2024 Mar 06.
Artigo em Inglês | MEDLINE | ID: mdl-38448936

RESUMO

BACKGROUND: Effectively managing the coexistence of both diabetes and disability necessitates substantial effort. Whether disability onset affects adherence to type 2 diabetes medication remains unclear. This study investigated whether disability onset reduces such adherence and whether any reduction varies by disability type. METHODS: This study used the National Disability Registry and National Health Insurance Research Database from Taiwan to identify patients with type 2 diabetes who subsequently developed a disability from 2013 to 2020; these patients were matched with patients with type 2 diabetes without disability onset during the study period. Type 2 diabetes medication adherence was measured using the medication possession ratio (MPR). A difference-in-differences analysis was performed to determine the effect of disability onset on the MPR. RESULTS: The difference-in-differences analysis revealed that disability onset caused a reduction of 5.76% in the 1-year MPR (P < 0.001) and 13.21% in the 2-year MPR (P < 0.001). Among all disability types, organ disabilities, multiple disabilities, rare diseases, and a persistent vegetative state exhibited the largest reductions in 2-year MPR. CONCLUSIONS: Policies aimed at improving medication adherence in individuals with disabilities should consider not only the specific disability type but also the distinct challenges and barriers these patients encounter in maintaining medication adherence.


Assuntos
Diabetes Mellitus Tipo 2 , Humanos , Diabetes Mellitus Tipo 2/tratamento farmacológico , Pacientes , Bases de Dados Factuais , Adesão à Medicação , Programas Nacionais de Saúde
16.
BMC Med ; 22(1): 101, 2024 Mar 06.
Artigo em Inglês | MEDLINE | ID: mdl-38448943

RESUMO

BACKGROUND: Non-alcoholic fatty liver disease (NAFLD) and metabolic-associated fatty liver disease (MAFLD) shares common pathophysiological mechanisms with type 2 diabetes, making them significant risk factors for type 2 diabetes. The present study aimed to assess the epidemiological feature of type 2 diabetes in patients with NAFLD or MAFLD at global levels. METHODS: Published studies were searched for terms that included type 2 diabetes, and NAFLD or MAFLD using PubMed, EMBASE, MEDLINE, and Web of Science databases from their inception to December 2022. The pooled global and regional prevalence and incidence density of type 2 diabetes in patients with NAFLD or MAFLD were evaluated using random-effects meta-analysis. Potential sources of heterogeneity were investigated using stratified meta-analysis and meta-regression. RESULTS: A total of 395 studies (6,878,568 participants with NAFLD; 1,172,637 participants with MAFLD) from 40 countries or areas were included in the meta-analysis. The pooled prevalence of type 2 diabetes among NAFLD or MAFLD patients was 28.3% (95% confidence interval 25.2-31.6%) and 26.2% (23.9-28.6%) globally. The incidence density of type 2 diabetes in NAFLD or MAFLD patients was 24.6 per 1000-person year (20.7 to 29.2) and 26.9 per 1000-person year (7.3 to 44.4), respectively. CONCLUSIONS: The present study describes the global prevalence and incidence of type 2 diabetes in patients with NAFLD or MAFLD. The study findings serve as a valuable resource to assess the global clinical and economic impact of type 2 diabetes in patients with NAFLD or MAFLD.


Assuntos
Diabetes Mellitus Tipo 2 , Hepatopatia Gordurosa não Alcoólica , Humanos , Hepatopatia Gordurosa não Alcoólica/epidemiologia , Diabetes Mellitus Tipo 2/complicações , Diabetes Mellitus Tipo 2/epidemiologia , Fatores de Risco , Bases de Dados Factuais , Pacientes
17.
Med Care ; 62(5): 314-318, 2024 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-38498871

RESUMO

BACKGROUND: Involving patients in the health-care delivery innovation has many benefits. Open social innovation (OSI) presents a fitting lens to examine and advance patient engagement in innovation. OSI offers a participatory approach to innovation, in which diverse groups of participants collaboratively generate ideas and scale solutions on complex social challenges. PURPOSE: This study: (1) describes a pilot application of OSI, in which individuals serving on a hospital's patients and family advisory councils (PFACs) were invited to participate in an innovation contest; and (2) explores the extent to which patients' beliefs about their role in innovation relate to their participation in the contest. METHODOLOGY/APPROACH: We conducted an innovation contest that invited PFAC members to share ideas that would improve patient experiences and then vote on and select the ideas that they wanted to see move forward. We measured patients' beliefs about their role in innovation in a survey before the contest. RESULTS: Twenty individuals submitted 27 ideas. Patients who expressed preference for more involvement in innovation were more likely to participate. CONCLUSIONS: Using OSI may help expand patient engagement in innovation, particularly among those who want to be more involved but do not feel authorized to voice ideas in traditional advisory committees. PRACTICAL IMPLICATIONS: OSI spurred collaboration among patients, clinicians, quality improvement staff, hospital administrators, and other stakeholders in idea generation, elaboration, and implementation. More experimentation and research are needed to understand how OSI can be leveraged to capture patients' voice and incorporate them in care delivery innovation.


Assuntos
Participação do Paciente , Pacientes , Humanos , Comitês Consultivos , Assistência Centrada no Paciente
18.
Milbank Q ; 102(1): 233-269, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38090879

RESUMO

Policy Points Patients' creative ideas may inform learning and innovation that improve patient-centered care. Routinely collected patient experience surveys provide an opportunity to invite patients to share their creative ideas for improvement. We develop and assess a methodological strategy that validates question wording designed to elicit creative ideas from patients. Health care organizations should consider how to report and use these data in health care delivery and quality improvement, and policymakers should consider promoting the use of narrative feedback to better understand and respond to patients' experiences. CONTEXT: Learning health systems (LHSs) have been promoted for a decade to achieve high-quality, patient-centered health care. Innovation driven by knowledge generated through day-to-day health care delivery, including patient insights, is critical to LHSs. However, the pace of translating patient insights into innovation is slow and effectiveness inadequate. This study aims to evaluate a method for systematically eliciting patients' creative ideas, examine the value of such ideas as a source of insight, and examine patients' creative ideas regarding how their experiences could be improved within the context of their own health systems. METHODS: The first stage of the study developed a survey and tested strategies for elicitation of patients' creative ideas with 600 patients from New York State. The second stage deployed the survey with the most generative open-ended question sequence within a health care system and involved analysis of 1,892 patients' responses, including 2,948 creative ideas. FINDINGS: Actionable, creative feedback was fostered by incorporating a request for transformative feedback into a sequence of narrative elicitation questions. Patients generate more actionable and creative ideas when explicitly invited to share such ideas, especially patients with negative health care experiences, those from minority racial/ethnic backgrounds, and those with chronic illness. The most frequently elicited creative ideas focused on solving challenges, proposing interventions, amplifying exceptional practices, and conveying hopes for the future. CONCLUSIONS: A valid and reliable method for eliciting creative ideas from patients can be deployed as part of routine patient experience surveys that include closed-ended survey items and open-ended narrative items in which patients share their experiences in their own words. The elicited creative ideas are promising for patient engagement and innovation efforts. This study highlights the benefits of engaging patients for quality improvement, offers a rigorously tested method for cultivating innovation using patient-generated knowledge, and outlines how creative ideas can enable organizational learning and innovation.


Assuntos
Cuidados Paliativos , Assistência Centrada no Paciente , Humanos , Assistência Centrada no Paciente/métodos , Pacientes , Participação do Paciente , Inquéritos e Questionários
19.
World J Urol ; 42(1): 118, 2024 Mar 06.
Artigo em Inglês | MEDLINE | ID: mdl-38446222

RESUMO

PURPOSE: To develop a specific self-management scale applicable to patients with indwelling double-J tube in urolithiasis, and to test its reliability and validity. METHODS: The construction and validation of our scale involved three stages. First, an initial version of the questionnaire was formed through literature analysis, group discussions, semi-structured interviews, and the Delphi method. Second, a pre-survey was conducted with 20 urolithiasis patients with indwelling double-J stent placement to test their understanding of the initial questionnaire items and its acceptability. Finally, a formal survey of 234 patients with indwelling double-J tube for urolithiasis was conducted, and the scale was tested for reliability and validity. RESULTS: After the three stages, a specific self-management scale for urolithiasis patients with indwelling double-J tube was developed, consisting of 30 items across five dimensions with a cumulative contribution rate of 52.541%. The content validity index for item level ranged from 0.8 to 1, and the content validity index for the questionnaire level was 0.93. The correlation between each item and its dimension was > 0.4. The Cronbach's alpha coefficient for the overall questionnaire was 0.910, and the Cronbach's alpha coefficients for each dimension ranged from 0.672 to 0.865. The split-half reliability of the overall questionnaire was 0.864, and the split-half reliabilities for each dimension ranged from 0.659 to 0.827. The test-retest reliability of the overall questionnaire was 0.840, and the test-retest reliabilities for each dimension ranged from 0.674 to 0.818. CONCLUSION: The specific self-management scale for urolithiasis patients with indwelling double-J tube has good reliability and validity, and it is a reliable and effective tool for evaluating and assessing the self-management level of patients with indwelling double-J tube in urolithiasis.


Assuntos
Autogestão , Urolitíase , Humanos , Reprodutibilidade dos Testes , Urolitíase/terapia , Pacientes , Stents
20.
World J Urol ; 42(1): 111, 2024 Feb 29.
Artigo em Inglês | MEDLINE | ID: mdl-38421452

RESUMO

PURPOSE: This study aims to investigate urinary symptoms (continence and stoma care), health-related quality of life (HRQoL) and psychosocial distress (PD) in the early postoperative period after radical cystectomy (RC) and urinary diversion for ileal conduit (IC) and ileal neobladder (INB) to obtain a better basis for patient counseling. METHODS: Data for 842 bladder cancer patients, who underwent 3 weeks of inpatient rehabilitation (IR) after RC and urinary diversion (447 IC, 395 INB) between April 2018 and December 2019 were prospectively collected. HRQoL, PD, and urinary symptoms were evaluated by validated questionnaires at the beginning (T1) and the end of IR (T2). In addition, continence status and micturition volume were objectively evaluated in INB patients by 24-h pad test and uroflowmetry, respectively. RESULTS: Global HRQoL was severely impaired at T1, without significant difference between the two types of urinary diversion. All functioning and symptom scales of HRQoL improved significantly from T1 to T2. In INB patients, all continence parameters improved significantly during IR, while patients with an IC reported fewer problems concerning urostomy management. The proportion of patients suffering from high PD decreased significantly from 50.7 to 34.9%. Age ≤ 59 years was the only independent predictor of high PD. Female patients and patients ≤ 59 years were more likely to use individual psycho-oncological counseling. CONCLUSION: HRQoL, PD and urinary symptoms improved significantly in the early recovery period after RC. Patients with urinary continence reported higher HRQoL and less PD. Psychosocial support should be offered especially to younger patients.


Assuntos
Neoplasias da Bexiga Urinária , Derivação Urinária , Humanos , Feminino , Pessoa de Meia-Idade , Cistectomia , Qualidade de Vida , Neoplasias da Bexiga Urinária/cirurgia , Pacientes
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