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BACKGROUND: Definitions of long COVID are evolving, and optimal models of care are uncertain. PURPOSE: To perform a scoping review on definitions of long COVID and provide an overview of care models, including a proposed framework to describe and distinguish models. DATA SOURCES: English-language articles from Ovid MEDLINE, PsycINFO, the Cochrane Library, SocINDEX, Scopus, Embase, and CINAHL published between January 2021 and November 2023; gray literature; and discussions with 18 key informants. STUDY SELECTION: Publications describing long COVID definitions or models of care, supplemented by models described by key informants. DATA EXTRACTION: Data were extracted by one reviewer and verified for accuracy by another reviewer. DATA SYNTHESIS: Of 1960 screened citations, 38 were included. Five clinical definitions of long COVID varied with regard to timing since symptom onset and the minimum duration required for diagnosis; 1 additional definition was symptom score-based. Forty-nine long COVID care models were informed by 5 key principles: a core "lead" team, multidisciplinary expertise, comprehensive access to diagnostic and therapeutic services, a patient-centered approach, and providing capacity to meet demand. Seven characteristics provided a framework for distinguishing models: home department or clinical setting, clinical lead, collocation of other specialties, primary care role, population managed, use of teleservices, and whether the model was practice- or systems-based. Using this framework, 10 representative practice-based and 3 systems-based models of care were identified. LIMITATIONS: Published literature often lacked key model details, data were insufficient to assess model outcomes, and there was overlap between and variability within models. CONCLUSION: Definitions of long COVID and care models are evolving. Research is needed to optimize models and evaluate outcomes of different models. PRIMARY FUNDING SOURCE: Agency for Healthcare Research and Quality. (Protocol posted at https://effectivehealthcare.ahrq.gov/products/long-covid-models-care/protocol.).
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COVID-19 , Síndrome de COVID-19 Pós-Aguda , SARS-CoV-2 , Humanos , COVID-19/diagnóstico , COVID-19/epidemiologia , COVID-19/terapia , Terminologia como Assunto , Atenção à Saúde/organização & administraçãoRESUMO
Importance: Skin cancer is the most common cancer type and is a major cause of morbidity. Objective: To systematically review the benefits and harms of screening for skin cancer to inform the US Preventive Services Task Force. Data Sources: MEDLINE, Embase, and the Cochrane Central Register of Controlled Trials from June 1, 2015, through January 7, 2022; surveillance through December 16, 2022. Study Selection: English-language studies conducted in asymptomatic populations 15 years or older. Data Extraction and Synthesis: Two reviewers independently appraised the articles and extracted relevant data from fair- or good-quality studies; results were narratively summarized. Main Outcomes and Measures: Morbidity; mortality; skin cancer stage, precursor lesions, or lesion thickness at detection; harms of screening. Results: Twenty studies in 29 articles were included (N = 6â¯053â¯411). Direct evidence on screening effectiveness was from 3 nonrandomized analyses of 2 population-based skin cancer screening programs in Germany (n = 1â¯791â¯615) and suggested no melanoma mortality benefit at the population level over 4 to 10 years' follow-up. Six studies (n = 2â¯935â¯513) provided inconsistent evidence on the association between clinician skin examination and lesion thickness or stage at diagnosis. Compared with usual care, routine clinician skin examination was not associated with increased detection of skin cancer or precursor lesions (5 studies) or stage at melanoma detection (3 studies). Evidence on the association between clinician skin examination and lesion thickness at detection was inconsistent (3 studies). Nine studies (n = 1â¯326â¯051) found a consistent positive association between more advanced stage at melanoma detection and increasing risk of melanoma-associated and all-cause mortality. Two studies (n = 232) found little to no persistent cosmetic or psychosocial harms associated with screening. Conclusions and Relevance: A substantial nonrandomized evidence base suggests a clear association between earlier stage at skin cancer detection and decreased mortality risk. However, nonrandomized studies suggest little to no melanoma mortality benefit associated with skin cancer screening with visual skin examination in adolescents or adults and no association between routine clinician skin examination and earlier stage at melanoma detection. Evidence is inconsistent regarding whether clinician skin examination is associated with thinner melanoma lesions at detection.
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Detecção Precoce de Câncer , Melanoma , Neoplasias Cutâneas , Adolescente , Adulto , Humanos , Detecção Precoce de Câncer/efeitos adversos , Detecção Precoce de Câncer/métodos , Programas de Rastreamento/efeitos adversos , Programas de Rastreamento/métodos , Melanoma/diagnóstico , Exame Físico/efeitos adversos , Exame Físico/métodos , Neoplasias Cutâneas/diagnósticoRESUMO
Importance: Cardiovascular disease and cancer are the 2 leading causes of death in the US, and vitamin and mineral supplementation has been proposed to help prevent these conditions. Objective: To review the benefits and harms of vitamin and mineral supplementation in healthy adults to prevent cardiovascular disease and cancer to inform the US Preventive Services Task Force. Data Sources: MEDLINE, PubMed (publisher-supplied records only), Cochrane Library, and Embase (January 2013 to February 1, 2022); prior reviews. Study Selection: English-language randomized clinical trials (RCTs) of vitamin or mineral use among adults without cardiovascular disease or cancer and with no known vitamin or mineral deficiencies; observational cohort studies examining serious harms. Data Extraction and Synthesis: Single extraction, verified by a second reviewer. Quantitative pooling methods appropriate for rare events were used for most analyses. Main Outcomes and Measures: Mortality, cardiovascular disease events, cancer incidence, serious harms. Results: Eighty-four studies (N=739â¯803) were included. In pooled analyses, multivitamin use was significantly associated with a lower incidence of any cancer (odds ratio [OR], 0.93 [95% CI, 0.87-0.99]; 4 RCTs [n=48â¯859]; absolute risk difference [ARD] range among adequately powered trials, -0.2% to -1.2%) and lung cancer (OR, 0.75 [95% CI, 0.58-0.95]; 2 RCTs [n=36â¯052]; ARD, 0.2%). However, the evidence for multivitamins had important limitations. Beta carotene (with or without vitamin A) was significantly associated with an increased risk of lung cancer (OR, 1.20 [95% CI, 1.01-1.42]; 4 RCTs [n=94â¯830]; ARD range, -0.1% to 0.6%) and cardiovascular mortality (OR, 1.10 [95% CI, 1.02-1.19]; 5 RCTs [n=94â¯506] ARD range, -0.8% to 0.8%). Vitamin D use was not significantly associated with all-cause mortality (OR, 0.96 [95% CI, 0.91-1.02]; 27 RCTs [n=117â¯082]), cardiovascular disease (eg, composite cardiovascular disease event outcome: OR, 1.00 [95% CI, 0.95-1.05]; 7 RCTs [n=74â¯925]), or cancer outcomes (eg, any cancer incidence: OR, 0.98 [95% CI, 0.92-1.03]; 19 RCTs [n=86â¯899]). Vitamin E was not significantly associated with all-cause mortality (OR, 1.02 [95% CI, 0.97-1.07]; 9 RCTs [n=107â¯772]), cardiovascular disease events (OR, 0.96 [95% CI, 0.90-1.04]; 4 RCTs [n=62â¯136]), or cancer incidence (OR, 1.02 [95% CI, 0.98-1.08]; 5 RCTs [n=76â¯777]). Evidence for benefit of other supplements was equivocal, minimal, or absent. Limited evidence suggested some supplements may be associated with higher risk of serious harms (hip fracture [vitamin A], hemorrhagic stroke [vitamin E], and kidney stones [vitamin C, calcium]). Conclusions and Relevance: Vitamin and mineral supplementation was associated with little or no benefit in preventing cancer, cardiovascular disease, and death, with the exception of a small benefit for cancer incidence with multivitamin use. Beta carotene was associated with an increased risk of lung cancer and other harmful outcomes in persons at high risk of lung cancer.
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Doenças Cardiovasculares , Minerais , Neoplasias , Vitaminas , Adulto , Comitês Consultivos , Doenças Cardiovasculares/epidemiologia , Doenças Cardiovasculares/prevenção & controle , Suplementos Nutricionais/efeitos adversos , Humanos , Neoplasias Pulmonares/epidemiologia , Neoplasias Pulmonares/prevenção & controle , Minerais/efeitos adversos , Minerais/uso terapêutico , Neoplasias/epidemiologia , Neoplasias/prevenção & controle , Prevenção Primária , Estados Unidos/epidemiologia , Vitamina A/efeitos adversos , Vitaminas/efeitos adversos , Vitaminas/uso terapêutico , beta Caroteno/efeitos adversosRESUMO
BACKGROUND: Repeated use of chemical irritants for crowd-control by local and federal law enforcement during sustained racial justice protests in the U.S. has raised concerns about potential adverse health effects. The objective of this study was to describe the health consequences of exposure to tear gas agents and associated healthcare utilization among adults reporting recent exposure to tear gas. METHODS: A cross-sectional, self-administered web-based survey of a convenience sample of 2257 adults reporting recent exposure to tear gas in Portland, Oregon (U.S.), administered between July 30, 2020-August 20, 2020. Descriptive analyses were conducted on socioeconomic characteristics, reported health issues, utilization of healthcare services, and frequency of reported exposure to tear gas. Associations between reported mental health issues, healthcare utilization and race and/or ethnic categories were assessed using a chi-square test. For tests of association, racial and/or ethnic categories were divided into White/Non-Hispanic only and all other racial/ethnic categories due to a small number of Black, American Indian or Alaska Native, Asian/Pacific Islander, Hispanic participants and participants with multiple race and/or ethnic background. Effect sizes for the differences were expressed as Cramer's V, a metric that measures associations between nominal responses. The Cochran-Armitage trend test was used to assess the relationship between health issues and the number of reported days of exposure to tear gas (i.e., a proxy dose of exposure) grouped into 1 day, 2-4 days, and ≥ 5 days. Missing data (item non-response) were omitted from the analysis. RESULTS: Almost all respondents (2116; 93.8%) reported physical (2114; 93.7%) or psychological (1635; 72.4%) health issues experienced immediately after (2105; 93.3%) or days following (1944; 86.1%) the exposure. A slightly higher proportion experienced delayed head or gastrointestinal tract issues compared with immediate complaints. The majority (1233; 54.6%) reported receiving or planning to seek medical or mental care. We observed a positive exposure-response trend for all except mouth-related delayed issues (p < 0.01). CONCLUSION: Persons who reported exposer to tear gas agents also reported physical and psychological health issues over a multiple-day period. Health issues reported increased with the frequency of reported exposure, indicating a potential dose-response; these health effects often led to healthcare utilization. This study provides evidence of potential unexpected harms of tear gas in civilians.
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Etnicidade , Gases Lacrimogênios , Adulto , Estudos Transversais , Hispânico ou Latino , Humanos , Oregon , Estados UnidosRESUMO
Systematic reviews are a necessary, but often insufficient, source of information to address the decision-making needs of health systems. In this paper, we address when and how the use of health system data might make systematic reviews more useful to decision-makers. We describe the different ways in which health system data can be used with systematic reviews, identify scenarios in which the addition of health system data may be most helpful (i.e., to improve the strength of evidence, to improve the applicability of evidence, and to inform the implementation of evidence), and discuss the importance of framing the limitations and considerations when using unpublished health system data in reviews. We developed a framework to guide the use of health system data alongside systematic reviews based on a narrative review of the literature and empirical experience. We also offer recommendations to improve the transparency of reporting when using health system data alongside systematic reviews including providing rationale for employing additional data, details on the data source, critical appraisal to understand study design biases as well as limitations in data and information quality, and how the unpublished data compares to the systematically reviewed data. Future methodological work on how best to handle internal and external validity concerns of health system data in the context of systematically reviewed data and work on developing infrastructure to do this type of work is needed.
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Programas Governamentais , Projetos de Pesquisa , HumanosRESUMO
OBJECTIVE: This study examines European decision makers' consideration and use of quantitative preference data. METHODS: The study reviewed quantitative preference data usage in 31 European countries to support marketing authorization, reimbursement, or pricing decisions. Use was defined as: agency guidance on preference data use, sponsor submission of preference data, or decision-maker collection of preference data. The data could be collected from any stakeholder using any method that generated quantitative estimates of preferences. Data were collected through: (1) documentary evidence identified through a literature and regulatory websites review, and via key opinion leader outreach; and (2) a survey of staff working for agencies that support or make healthcare technology decisions. RESULTS: Preference data utilization was identified in 22 countries and at a European level. The most prevalent use (19 countries) was citizen preferences, collected using time-trade off or standard gamble methods to inform health state utility estimation. Preference data was also used to: (1) value other impact on patients, (2) incorporate non-health factors into reimbursement decisions, and (3) estimate opportunity cost. Pilot projects were identified (6 countries and at a European level), with a focus on multi-criteria decision analysis methods and choice-based methods to elicit patient preferences. CONCLUSION: While quantitative preference data support reimbursement and pricing decisions in most European countries, there was no utilization evidence in European-level marketing authorization decisions. While there are commonalities, a diversity of usage was identified between jurisdictions. Pilots suggest the potential for greater use of preference data, and for alignment between decision makers.
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Pesquisa sobre Serviços de Saúde/organização & administração , Preferência do Paciente , Mecanismo de Reembolso , Projetos de Pesquisa , Avaliação da Tecnologia Biomédica/métodos , Tecnologia Biomédica/economia , Comportamento de Escolha , Custos e Análise de Custo , Tomada de Decisões , Técnicas de Apoio para a Decisão , Europa (Continente) , Humanos , Projetos Piloto , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Patients with diabetes lack information on which commercially available applications (apps) improve diabetes-related outcomes. We conducted a rapid evidence review to examine features, clinical efficacy, and usability of apps for self-management of type 1 and type 2 diabetes in adults. METHODS: Ovid/Medline and the Cochrane Database of Systematic Reviews were searched for systematic reviews and technology assessments. Reference lists of relevant systematic reviews were examined for primary studies. Additional searches for primary studies were conducted online, through Ovid/Medline, Embase, CINAHL, and ClinicalTrials.gov . Studies were evaluated for eligibility based on predetermined criteria, data were extracted, study quality was assessed using a risk of bias tool, information on app features was collected, and app usability was assessed. Results are summarized qualitatively. RESULTS: Fifteen articles evaluating 11 apps were identified: six apps for type 1 and five apps for type 2 diabetes. Common features of apps included setting reminders and tracking blood glucose and hemoglobin A1c (HbA1c), medication use, physical activity, and weight. Compared with controls, use of eight apps, when paired with support from a healthcare provider or study staff, improved at least one outcome, most often HbA1c. Patients did not experience improvements in quality of life, blood pressure, or weight, regardless of app used or type of diabetes. Study quality was variable. Of the eight apps available for usability testing, two were scored "acceptable," three were "marginal," and three were "not acceptable." DISCUSSION: Limited evidence suggests that use of some commercially available apps, when combined with additional support from a healthcare provider or study staff, may improve some short-term diabetes-related outcomes. The impact of these apps on longer-term outcomes is unclear. More rigorous and longer-term studies of apps are needed. REGISTRATION: This review was funded by the Agency for Healthcare Research and Quality (AHRQ). The protocol is available at: http://www.effectivehealthcare.ahrq.gov/topics/diabetes-mobile-devices/research-protocol .
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Telefone Celular , Diabetes Mellitus/terapia , Medicina Baseada em Evidências/métodos , Aplicativos Móveis , Autocuidado/métodos , Autogestão/métodos , Diabetes Mellitus/diagnóstico , Humanos , Ensaios Clínicos Controlados Aleatórios como Assunto/métodosRESUMO
BACKGROUND: As breast cancer screening guidelines have changed recently, additional investigation is needed to understand changes in women's behavior after using breast cancer screening patient decision aids (BCS-PtDAs) and the potential effect on mammography utilization. This systematic review and meta-analysis sought to evaluate the effect of BCS-PtDAs on changes in women's intentions to undergo screening mammography and whether women deciding to begin or discontinue screening mammography displayed similar changes in screening intentions after using a BCS-PtDA. METHODS: We searched Medline, Scopus, PsycINFO, CENTRAL, Health and Psychosocial Instruments, Health Technology Assessment Database, PsycARTICLES, and cited references in eligible papers for randomized controlled trials (RCTs) and observational studies, published through August 24, 2016. The proportions of women who did and not intend to undergo screening and who were uncertain about undergoing screening mammography were pooled, using risk ratios (RR) and random effects. According to the protocol, RCTs or observational studies and any language were considered eligible for systematic review if they included data about women for which shared decision making is recommended. RESULTS: We ultimately included six studies with screening intention data for 2040 women. Compared to usual care, the use of BCS-PtDAs in three RCTs resulted in significantly more women deciding not to undergo screening mammography (RR 1.48 [95% CI 1.04-2.13]; P = 0.03), particularly for younger (38-50 years) women (1.77 [1.34-2.34]; P < 0.001). The use of BCS-PtDAs had a non-significant effect on the intentions of older women (69-89 years) to discontinue screening. CONCLUSIONS: The use of BCS-PtDAs increased younger women's reluctance to undergo screening for breast cancer. The implementation of such BCS-PtDAs in clinical practice would be expected to result in a 77% increase in the number of younger women (aged 38-50) who do not intend to be screened, and as a consequence, may reduce utilization of screening mammography. REGISTRATION: The protocol of this review is registered in the PROSPERO database, #CRD42016036695.
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Neoplasias da Mama/diagnóstico , Técnicas de Apoio para a Decisão , Detecção Precoce de Câncer/tendências , Mamografia/tendências , Participação do Paciente/tendências , Neoplasias da Mama/epidemiologia , Tomada de Decisões , Detecção Precoce de Câncer/psicologia , Feminino , Humanos , Mamografia/psicologia , Participação do Paciente/psicologia , Ensaios Clínicos Controlados Aleatórios como Assunto/métodosRESUMO
OBJECTIVE: Patient engagement is critical to clinical practice guideline (CPG) development. This work presents our approach to ascertaining patients' values and preferences to inform the American College of Rheumatology guidelines for screening, monitoring, and treatment of interstitial lung disease (ILD) in people with systemic autoimmune rheumatic diseases (SARDs). METHODS: We conducted a cross-sectional qualitative study of a purposefully sampled Patient Panel using a modified content analytic approach. The study team reviewed text transcripts from the Patient Panel discussion to identify themes and develop a clustered thematic schema. RESULTS: Twenty-one patients (75% women) participated, with a mean age of 53 years (range 33-73). Patients had one or more SARDs: systemic sclerosis (38%), Sjögren disease (38%), idiopathic inflammatory myopathy (33%), rheumatoid arthritis (24%), and mixed connective tissue disease (10%). We identified 10 themes in 4 thematic clusters: communication, screening and monitoring, treatment goals, and treatment adverse effects. Patients prioritized recognizing ILD symptoms, importance of ILD screening and close monitoring, goals of survival and improving quality of life, and willingness to accept treatment risks provided that there is close communication with providers. Patient representatives shared patients' priorities and insight at the Voting Panel meeting, influencing multiple guideline recommendations. CONCLUSION: Patient engagement fosters a holistic approach to CPG development, leading to recommendations aiming for the best clinical outcomes while prioritizing outcomes important for patients. The patient-identified themes played a critical role in ILD guideline development and provide core elements for shared decision-making as clinicians make management and therapeutic decisions with patients with SARD-associated ILD.
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Doenças Pulmonares Intersticiais , Preferência do Paciente , Guias de Prática Clínica como Assunto , Reumatologia , Humanos , Doenças Pulmonares Intersticiais/terapia , Doenças Pulmonares Intersticiais/diagnóstico , Feminino , Pessoa de Meia-Idade , Masculino , Estudos Transversais , Idoso , Adulto , Reumatologia/normas , Pesquisa Qualitativa , Participação do Paciente , Doenças Reumáticas/terapia , Doenças Reumáticas/diagnósticoRESUMO
Young adults are a substantial driver of lagging vaccination against COVID-19 worldwide. We aimed to understand what vaccine or vaccination environment attributes may affect young adults' vaccine inclination. We contacted a convenience sample of 1415 students to recruit a minimum of 150 individuals for a web-based discrete choice experiment. The respondents were asked to choose one of two hypothetical vaccines, defined by six attributes-vaccine efficacy, risk of mild side effects, protection duration, administration route, recommender, and travel time to the vaccination site. Individual preferences were calculated with the Markov chain Monte Carlo hierarchical Bayes estimation. A total of 445 individuals (mean age 24.4 years, 272 (61.1%) women) completed the survey between 22 March and 3 May 2021. Vaccine protection duration (28.3 (95% CI, 27.0-29.6)) and vaccine efficacy in preventing COVID-19 (27.5 (95% CI, 26.3-28.8)) were the most important, followed by the risk of vaccine side effects (17.3 (95% CI, 16.2-18.4)). Individuals reluctant or unsure about vaccination (21.1%) prioritized the potential for mild side effects higher and vaccine efficacy lower than the vaccine-inclined individuals. New vaccination programs that target young adults should emphasize the protection duration, low risk of vaccine side effects, and high efficacy.
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PURPOSE: We conducted a rapid evidence review to explore the benefits and harms of digital cognitive-behavioral therapy (dCBT) and the barriers to and facilitators of implementing dCBT for adolescents. METHODS: We searched MEDLINE, PsycINFO, CENTRAL through December 6, 2021, for controlled trials conducted in settings highly applicable to the United States. Additionally, we searched relevant systematic reviews for eligible studies. Results were summarized qualitatively. RESULTS: We included 12 trials (n = 1,575) that examined the effects of nine dCBT programs. Overall, dCBT was slightly superior to comparators in improving depression symptoms immediately post-intervention, but not at a longer follow-up. The use of dCBT did not appear to result in an increased risk for suicidal attempts or ideation; however, the number of events was very small. Potential barriers to implementing/maintaining dCBT are challenges engaging/retaining patients, developing infrastructure, and training therapists to facilitate dCBT. Data on harms or unintended negative consequences were not reported in the included studies. CONCLUSIONS: A limited body of evidence suggests that dCBT programs might outperform control interventions for reducing depressive symptoms immediately post-intervention, but not at a longer follow-up. The safety of dCBT programs for adolescents with depression is understudied.
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Terapia Cognitivo-Comportamental , Depressão , Adolescente , Terapia Cognitivo-Comportamental/métodos , Depressão/terapia , HumanosRESUMO
Aims. This methods project was conducted to support the US Preventive Services Task Force's (USPSTF) consideration of how information pertinent to shared decision making (SDM) can be best communicated in its recommendations. Methods. The project included a literature scan to identify SDM frameworks, audit of six USPSTF recommendations to judge the completeness of SDM communication, input from eight SDM experts on the most helpful SDM guidance to provide in USPSTF recommendations, and review of USPSTF recommendations and evidence reports to establish criteria for identifying topics that would most benefit from additional communication resources. Results. We identified eight SDM frameworks and selected one to guide the audit of USPSTF recommendations. All six recommendations include SDM elements related to the patient's role in decision making, preventive service being considered, pros and cons of options, uncertainties about benefits and harms, and importance of patient preferences. Two SDM elements are not routinely communicated in the recommendations-identification of not screening or initiating preventive medication as an alternative and the importance of patient understanding of options. Experts offered suggestions for essential SDM elements to address, such as assessing decisional conflict to measure patient uncertainty in choosing an option and highlighting uncertainty in estimates of benefit and harm, credibility of the evidence base, precision of estimates, and applicability to the individual patient. We developed six criteria for selection of USPSTF recommendations to supplement with a communication resource. Conclusions. The findings of this project can assist the USPSTF and other clinical guideline developers in incorporating SDM information in recommendations and determining which topics would most benefit from additional communication resources to support clinicians in engaging patients in SDM.
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BACKGROUND: To document a generalizable process for developing a patient-prioritized chronic obstructive pulmonary disease (COPD) research agenda and to provide an overview of domains that were developed in response to people living with COPD and caregivers' suggestions for research. METHODS: Adults with COPD and caregivers who are members of the COPD Patient-Powered Research Network (PPRN) provided suggestions for COPD-related research through a self-administered, online survey. These responses were analyzed with a content analysis approach: domains for categorizing all survey responses were created, then all responses were categorized independently by a group of researchers, then these categorizations were adjudicated, and finally a density map was created that represented the number of responses in each of the domains. RESULTS: At the time of analysis, 6157 adults had fully completed the baseline survey. Survey responses were categorized across seven domains as follows: 22.5% of all responses fell into the domain family/social/community research, 20.8% of all responses fell into the domain well-being, 15% of all responses fell into the domain curative research, 14.6% of all responses fell into the domain biomedical therapies, 10.5% of all responses fell into the domain policy concerns, 6% of all responses fell into the domain holistic therapies and 10.7% of all responses fell into the domain ambiguous comments that could not be translated into concrete research topics. CONCLUSION: Using qualitative open-ended survey responses from the COPD PPRN registrants, we were able to identify six key domains of research about COPD that are considered most important by patients. These domains differ in content from prior scientist-led efforts to develop priorities for COPD research, demonstrating the ongoing importance of involving patients and their caregivers in determining research priorities. The results suggest the field can more closely align research efforts to patient priorities by considering the identified domains.
The COPD Patient-Powered Research Network (PPRN) asked adults with COPD and their caregivers to suggest areas for future research on COPD. Researchers analyzed 7336 survey responses and created six research areas to reflect their suggestions: (1) family/social/community research, (2) well-being, (3) research on a cure for COPD, (4) new drugs and treatments, (5) policy concerns, and (6) natural therapies. Several research topics patients and their caregivers identified as important have received little attention from researchers in the past and could be valuable topics for researchers to explore.
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Background: U.S. Preventive Services Task Force (USPSTF) recommendations for mammography screening, genetic counseling and testing for pathogenic BRCA1/2 mutations, and use of risk-reducing medications require assessment of breast cancer risk for clinical decision-making, but efficient methods for risk assessment in clinical practice are lacking. Materials and Methods: A cross-sectional study evaluating a web-based breast cancer risk assessment and decision aid (MammoScreen) was conducted in an academic general internal medicine clinic. All eligible women, 40-74 years of age without previous diagnosis of breast or ovarian cancer and who were enrolled in the Epic MyChart patient portal were invited. MammoScreen uptake and completion rates and consistency between breast cancer risk determined by MammoScreen and existing risk information in the Epic record were measured. Patient and physician experiences were summarized from interviews. Results: Of 448 invited participants, 339 (75.7%) read their MyChart invitation and 125 (36.9%) who read invitations enrolled in the study; 118 (94.4% of enrolled) completed MammoScreen. Twenty-one women were categorized as above-average risk from either MammoScreen data or the chart review and 7 (33.3%) were identified by both sources. Physicians and patients believed MammoScreen was easy to use and was helpful in identifying risks and facilitating shared decision-making. Conclusions: Breast cancer risk assessment and mammography screening decision support were efficiently implemented through a web-based tool for patients sent through an electronic patient portal. Integration of patient decision aids with risk algorithms in clinical practice may help support the implementation of USPSTF recommendations that include risk assessment and shared decision-making.
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Neoplasias da Mama/diagnóstico , Tomada de Decisões , Mamografia , Aplicativos Móveis , Atenção Primária à Saúde , Medição de Risco/métodos , Adulto , Idoso , Tomada de Decisão Clínica , Estudos Transversais , Técnicas de Apoio para a Decisão , Detecção Precoce de Câncer , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Pessoa de Meia-IdadeRESUMO
OBJECTIVE: The peer review of completed Patient-Centered Outcomes Research Institute (PCORI) funded research includes reviews from patient reviewers (patients, caregivers, and patient advocates). Very little is known about how best to support these reviewers in writing helpful comments from a patient-centred perspective. This study aimed to evaluate the effect of a new training in peer review for patient reviewers. DESIGN: Observational study. SETTING: Online. PARTICIPANTS: Adults registered in the PCORI Reviewer Database as a patient stakeholder. INTERVENTION: A new online training in peer review. MAIN OUTCOME MEASURES: Changes in reviewers' knowledge and skills; change in self-efficacy and attitudes, satisfaction with the training and perceived benefits and relevance of the training. RESULTS: Before-after training survey data were analysed for 37 (29.4% of 126) patient reviewers invited to participate in an online training as part of a quality improvement effort or as part of a PCORI peer review. The reviewers improved their answers to the knowledge questions (p<0.001, median number of answers improved 4 (95% CI 3 to 5), large effect size (ES) Cohen's w=0.94) after the training, particularly in the questions targeting the specifics of PCORI peer review. Reviewers improved their skills in recognising helpful review comments, but those without peer-review background improved proportionally more (p=0.008, median number of answers improved 2 (95% CI 1 to 3), medium ES w=0.60). The use of training modestly increased reviewers' confidence in completing a high-quality peer review (p=0.005, mean increase in 5-point Likert rating 0.51 (95% CI 0.17 to 0.86), small-to-medium ES Cliff's delta=0.32) and their excitement about providing a review slightly increased (p=0.019, mean increase in 5-point Likert rating 0.35 (95% CI 0.03 to 0.68), small ES delta=0.19). All reviewers were satisfied with the training and would recommend it to other reviewers. CONCLUSIONS: Training improved knowledge, skills and self-efficacy and slightly increased enthusiasm for completing a PCORI peer review.
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Academias e Institutos , Educação/organização & administração , Avaliação de Resultados da Assistência ao Paciente , Participação do Paciente/métodos , Revisão da Pesquisa por Pares/métodos , Adulto , Idoso , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Inquéritos e QuestionáriosRESUMO
CONTEXT: Although screening recommendations for prostate cancer using prostate-specific antigen testing often include shared decision making, the effect of patient decision aids on patients' intention and uptake is unclear. This study aimed to review the effect of decision aids on men's screening intention, screening utilization, and the congruence between intentions and uptake. EVIDENCE ACQUISITION: Data sources were searched through April 6, 2018, and included MEDLINE, Scopus, CENTRAL, CT.gov, Cochrane report, PsycARTICLES, PsycINFO, and reference lists. This study included RCTs and observational studies of decision aids that measured prostate screening intention or behavior. The analysis was completed in April 2018. EVIDENCE SYNTHESIS: Eighteen studies (13 RCTs, four before-after studies, and one non-RCT) reported data on screening intention for â 8,400 men and screening uptake for 2,385 men. Compared with usual care, the use of decision aids in any format results in fewer men (aged ≥40 years) planning to undergo prostate-specific antigen testing (risk ratio=0.88, 95% CI=0.81, 0.95, p=0.006, I2=66%, p<0.001, n=8). Many men did not follow their screening intentions during the first year after using a decision aid; however, most men who were planning to undergo screening did so (probability that men who wanted to be screened would receive screening was 95%). CONCLUSIONS: Integration of decision aids in clinical practice may result in a decrease in the number of men who elect prostate-specific antigen testing, which may in turn reduce screening uptake. To ensure high congruence between intention and screening utilization, providers should not delay the shared decision-making discussion after patients use a decision aid.