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Academic Emergency Medicine : Official... Dec 2018In 2018, the Society for Academic Emergency Medicine and the journal Academic Emergency Medicine (AEM) convened a consensus conference entitled, "Academic Emergency...
In 2018, the Society for Academic Emergency Medicine and the journal Academic Emergency Medicine (AEM) convened a consensus conference entitled, "Academic Emergency Medicine Consensus Conference: Aligning the Pediatric Emergency Medicine Research Agenda to Reduce Health Outcome Gaps." This article is the product of the breakout session, "Emergency Department Collaboration-Pediatric Emergency Medicine in Non-Children's Hospital"). This subcommittee consisting of emergency medicine, pediatric emergency medicine, and quality improvement (QI) experts, as well as a patient advocate, identified main outcome gaps in the care of children in the emergency departments (EDs) in the following areas: variations in pediatric care and outcomes, pediatric readiness, and gaps in knowledge translation. The goal for this session was to create a research agenda that facilitates collaboration and partnering of diverse stakeholders to develop a system of care across all ED settings with the aim of improving quality and increasing safe medical care for children. The following recommended research strategies emerged: explore the use of technology as well as collaborative networks for education, research, and advocacy to develop and implement patient care guidelines, pediatric knowledge generation and dissemination, and pediatric QI and prepare all EDs to care for the acutely ill and injured pediatric patients. In conclusion, collaboration between general EDs and academic pediatric centers on research, dissemination, and implementation of evidence into clinical practice is a solution to improving the quality of pediatric care across the continuum.
Topics: Child; Cooperative Behavior; Emergency Service, Hospital; Evidence-Based Emergency Medicine; Health Services Research; Humans; Outcome Assessment, Health Care; Pediatric Emergency Medicine; Quality Improvement
PubMed: 30353946
DOI: 10.1111/acem.13642 -
Implementation Science : IS Feb 2022Implementation outcomes research spans an exciting mix of fields, disciplines, and geographical space. Although the number of studies that cite the 2011 taxonomy has...
BACKGROUND
Implementation outcomes research spans an exciting mix of fields, disciplines, and geographical space. Although the number of studies that cite the 2011 taxonomy has expanded considerably, the problem of harmony in describing outcomes persists. This paper revisits that problem by focusing on the clarity of reporting outcomes in studies that examine them. Published recommendations for improved reporting and specification have proven to be an important step in enhancing the rigor of implementation research. We articulate reporting problems in the current implementation outcomes literature and describe six practical recommendations that address them.
RECOMMENDATIONS
Our first recommendation is to clearly state each implementation outcome and provide a definition that the study will consistently use. This includes providing an explanation if using the taxonomy in a new way or merging terms. Our second recommendation is to specify how each implementation outcome will be analyzed relative to other constructs. Our third recommendation is to specify "the thing" that each implementation outcome will be measured in relation to. This is especially important if you are concurrently studying interventions and strategies, or if you are studying interventions and strategies that have multiple components. Our fourth recommendation is to report who will provide data and the level at which data will be collected for each implementation outcome, and to report what kind of data will be collected and used to assess each implementation outcome. Our fifth recommendation is to state the number of time points and frequency at which each outcome will be measured. Our sixth recommendation is to state the unit of observation and the level of analysis for each implementation outcome.
CONCLUSION
This paper advances implementation outcomes research in two ways. First, we illustrate elements of the 2011 research agenda with concrete examples drawn from a wide swath of current literature. Second, we provide six pragmatic recommendations for improved reporting. These recommendations are accompanied by an audit worksheet and a list of exemplar articles that researchers can use when designing, conducting, and assessing implementation outcomes studies.
Topics: Humans; Outcome Assessment, Health Care
PubMed: 35135566
DOI: 10.1186/s13012-021-01183-3 -
BMC Geriatrics Jun 2024The aging population is a challenge for the healthcare system that must identify strategies that meet their needs. Practicing patient-centered care has been shown... (Review)
Review
INTRODUCTION
The aging population is a challenge for the healthcare system that must identify strategies that meet their needs. Practicing patient-centered care has been shown beneficial for this patient-group. The effect of patient-centered care is called patient-centered outcomes and can be appraised using outcomes measurements.
OBJECTIVES
The main aim was to review and map existing knowledge related to patient-centered outcomes and patient-centered outcomes measurements for older people, as well as identify key-concepts and knowledge-gaps. The research questions were: How can patient-centered outcomes for older people be measured, and which patient-centered outcomes matters the most for the older people?
STUDY DESIGN
Scoping review.
METHODS
Search for relevant publications in electronical databases, grey literature databases and websites from year 2000 to 2021. Two reviewers independently screened titles and abstracts, followed by full text review and extraction of data using a data extraction framework.
RESULTS
Eighteen studies were included, of which six with involvement of patients and/or experts in the process on determine the outcomes. Outcomes that matter the most to older people was interpreted as: access to- and experience of care, autonomy and control, cognition, daily living, emotional health, falls, general health, medications, overall survival, pain, participation in decision making, physical function, physical health, place of death, social role function, symptom burden, and time spent in hospital. The most frequently mentioned/used outcomes measurements tools were the Adult Social Care Outcomes Toolkit (ASCOT), EQ-5D, Gait Speed, Katz- ADL index, Patient Health Questionnaire (PHQ9), SF/RAND-36 and 4-Item Screening Zarit Burden Interview.
CONCLUSIONS
Few studies have investigated the older people's opinion of what matters the most to them, which forms a knowledge-gap in the field. Future research should focus on providing older people a stronger voice in what they think matters the most to them.
Topics: Humans; Patient-Centered Care; Aged; Outcome Assessment, Health Care; Patient Outcome Assessment
PubMed: 38890618
DOI: 10.1186/s12877-024-05134-7 -
Archives of Dermatological Research Jun 2024Steven Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN), grouped together under the terminology of epidermal necrolysis (EN), are a spectrum of... (Review)
Review
Steven Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN), grouped together under the terminology of epidermal necrolysis (EN), are a spectrum of life-threatening dermatologic conditions. A lack of standardization and validation for existing endpoints has been identified as a key barrier to the comparison of these therapies and development of evidenced-based treatment. Following PRISMA guidelines, we conducted a systematic review of prospective studies involving systemic or topical treatments for EN, including dressing and ocular treatments. Outcomes were separated into mortality assessment, cutaneous outcomes, non-cutaneous clinical outcomes, and mucosal outcomes. The COSMIN Risk of Bias tool was used to assess the quality of studies on reliability and measurement error of outcome measurement instruments. Outcomes across studies assessing treatment in the acute phase of EN were varied. Most data came from prospective case reports and cohort studies representing the lack of available randomized clinical trial data available in EN. Our search did not reveal any EN-specific validated measures or scoring tools used to assess disease progression and outcomes. Less than half of included studies were considered "adequate" for COSMIN risk of bias in reliability and measurement error of outcome measurement instruments. With little consensus about management and treatment of EN, consistency and validation of measured outcomes is of the upmost importance for future studies to compare outcomes across treatments and identify the most effective means of combating the disease with the highest mortality managed by dermatologists.
Topics: Humans; Stevens-Johnson Syndrome; Reproducibility of Results; Outcome Assessment, Health Care; Treatment Outcome; Bandages
PubMed: 38878166
DOI: 10.1007/s00403-024-03062-5 -
Brain and Behavior Dec 2022Childhood cancer and cancer-related treatments disrupt brain development and maturation, placing survivors at risk for cognitive late effects. Given that assessment... (Review)
Review
OBJECTIVE
Childhood cancer and cancer-related treatments disrupt brain development and maturation, placing survivors at risk for cognitive late effects. Given that assessment tools vary widely across researchers and clinicians, it has been daunting to identify distinct patterns in outcomes across diverse cancer types and to implement systematic neurocognitive screening tools. This review aims to operationalize processing efficiency skill impairment-or inefficient neural processing as measured by working memory and processing speed abilities-as a worthwhile avenue for continued study within the context of childhood cancer.
METHODS
A comprehensive literature review was conducted to examine the existing research on cognitive late effects and biopsychosocial risk factors in order to conceptualize processing efficiency skill trends in childhood cancer survivors.
RESULTS
While a frequently reported pattern of neurobiological (white matter) and cognitive (working memory and processing speed) disruption is consistent with processing efficiency skill impairment, these weaknesses have not yet been fully operationalized in this population. We offer a theoretical model that highlights the impacts of a host of biological and environmental factors on the underlying neurobiological substrates of cancer survivors that precede and may even predict long-term cognitive outcomes and functional abilities following treatment.
CONCLUSION
The unified construct of processing efficiency may be useful in assessing and communicating neurocognitive skills in both outcomes research and clinical practice. Deficits in processing efficiency may serve as a possible indicator of cognitive late effects and functional outcomes due to the unique relationship between processing efficiency skills and neurobiological disruption following cancer treatment. Continued research along these lines is crucial for advancing childhood cancer outcomes research and improving quality of life for survivors.
Topics: Child; Humans; Cancer Survivors; Quality of Life; Survivors; Memory, Short-Term; Neoplasms; Outcome Assessment, Health Care
PubMed: 36330565
DOI: 10.1002/brb3.2809 -
Developmental Medicine and Child... Feb 2020To develop a core outcome set (COS) for evaluating gastrostomy/gastrojejunostomy tube impact in children with neurological impairment.
AIM
To develop a core outcome set (COS) for evaluating gastrostomy/gastrojejunostomy tube impact in children with neurological impairment.
METHOD
Healthcare providers/researchers and caregivers rated the importance of candidate outcomes on a 5-point Likert scale. Outcomes rated 'somewhat important' or 'very important' by most (≥85%) respondents were voted on during a consensus meeting. Outcomes that reached consensus for inclusion were ratified and assigned to Outcome Measures in Rheumatology filter core areas. The COS was validated in a separate group of caregivers.
RESULTS
Twelve outcomes were selected from 120 candidate outcomes to form the COS. These included five 'Life Impact' outcomes, three 'Pathophysiological Manifestations' outcomes, two 'Resource Use' outcomes, one 'Growth and Development' outcome, and one 'Death' outcome.
INTERPRETATION
We developed an evidence-informed and consensus-based COS for use in studies of gastrostomy/gastrojejunostomy tube feeding in children with neurological impairment. Implementation of this COS will help reduce heterogeneity between studies and facilitate evidence-based decision-making.
WHAT THE PAPER ADDS
Caregivers, healthcare providers, and researchers ranked the importance of 120 outcomes. Twelve core outcomes were identified as essential to measure in future clinical research studies.
Topics: Adolescent; Child; Clinical Studies as Topic; Enteral Nutrition; Gastrostomy; Humans; Jejunostomy; Nervous System Diseases; Outcome Assessment, Health Care; Primary Health Care
PubMed: 31372989
DOI: 10.1111/dmcn.14326 -
Joint Models of Longitudinal and Time-to-Event Data with More Than One Event Time Outcome: A Review.The International Journal of... Jan 2018Methodological development and clinical application of joint models of longitudinal and time-to-event outcomes have grown substantially over the past two decades.... (Review)
Review
Methodological development and clinical application of joint models of longitudinal and time-to-event outcomes have grown substantially over the past two decades. However, much of this research has concentrated on a single longitudinal outcome and a single event time outcome. In clinical and public health research, patients who are followed up over time may often experience multiple, recurrent, or a succession of clinical events. Models that utilise such multivariate event time outcomes are quite valuable in clinical decision-making. We comprehensively review the literature for implementation of joint models involving more than a single event time per subject. We consider the distributional and modelling assumptions, including the association structure, estimation approaches, software implementations, and clinical applications. Research into this area is proving highly promising, but to-date remains in its infancy.
Topics: Data Interpretation, Statistical; Humans; Longitudinal Studies; Models, Statistical; Outcome Assessment, Health Care
PubMed: 29389664
DOI: 10.1515/ijb-2017-0047 -
Arquivos Brasileiros de Oftalmologia 2021The purpose of this study is to translate and validate a Portuguese version of the Keratoconus Outcomes Research Questionnaire. The Keratoconus Outcomes Research...
PURPOSE
The purpose of this study is to translate and validate a Portuguese version of the Keratoconus Outcomes Research Questionnaire. The Keratoconus Outcomes Research Questionnaire is a psychometrically robust and valid instrument used to assess the impact of keratoconus on activity limitations and symptoms.
METHODS
We performed a translation, cross-cultural adaptation, and validation of the Portuguese version of the Keratoconus Outcomes Research Questionnaire. The initial translation of the English version to the Portuguese language was performed by two independent native speaker translators, followed by an interdisciplinary panel evaluation of the translated version. The Portuguese version was then back-translated into English by two independent native speakers, followed by evaluation and comparison with the original English version by the same interdisciplinary panel. For subsequent validation, the translated questionnaire was administered at two different times to a population of 30 subjects, and the results were compared in a concordance analysis.
RESULTS
The translation into Portuguese and back-translation were determined to be correct. Thirty participants were enrolled in the study (mean age, 29.23 ± 7.56 years). Nine questions (31%) had almost perfect agreement (questions 3, 4, 5, 8, 18, 22, 27, 28, and 29), 15 questions (51.7%) had substantial agreement (questions 1, 2, 6, 7, 9, 12, 14, 15, 16, 17, 20, 21, 23, 25, and 26), 4 questions (13.8%) had moderate agreement (questions 10, 11, 19, and 24) and 1 question (3.5%) had reasonable agreement (question 13). High-correlation coefficients were obtained when comparing results of the initial application and second application of this questionnaire to a sample of 30 individuals, which indicated excellent concordance with regard to results, repeatability, and reliability.
CONCLUSIONS
This translated and validated questionnaire can be applied to a larger population with the intent to assess quality of life in keratoconus patients in the overall Brazilian population as well as in distinct regions of the country.
Topics: Adult; Brazil; Cross-Cultural Comparison; Humans; Keratoconus; Language; Outcome Assessment, Health Care; Portugal; Quality of Life; Reproducibility of Results; Surveys and Questionnaires; Translations; Young Adult
PubMed: 34320101
DOI: 10.5935/0004-2749.20210067 -
Health Services Research Apr 2017To learn how minority and underserved communities would set priorities for patient-centered outcomes research (PCOR).
OBJECTIVE
To learn how minority and underserved communities would set priorities for patient-centered outcomes research (PCOR).
DATA SOURCES
Sixteen groups (n = 183) from minority and underserved communities in two states deliberated about PCOR priorities using the simulation exercise CHoosing All Together (CHAT). Most participants were minority, one-third reported income <$10,000, and one-fourth reported fair/poor health.
DESIGN
Academic-community partnerships adapted CHAT for PCOR priority setting using existing research agendas and interviews with community leaders, clinicians, and key informants.
DATA COLLECTION
Tablet-based CHAT collected demographic information, individual priorities before and after group deliberation, and groups' priorities.
PRINCIPAL FINDINGS
Individuals and groups prioritized research on Quality of Life, Patient-Doctor, Access, Special Needs, and (by total resources spent) Compare Approaches. Those with less than a high school education were less likely to prioritize New Approaches, Patient-Doctor, Quality of Life, and Families/Caregivers. Blacks were less likely to prioritize research on Causes of Disease, New Approaches, and Compare Approaches than whites. Compare Approaches, Special Needs, Access, and Families/Caregivers were significantly more likely to be selected by individuals after compared to before deliberation.
CONCLUSIONS
Members of underserved communities, in informed deliberations, prioritized research on Quality of Life, Patient-Doctor, Special Needs, Access, and Compare Approaches.
Topics: Adolescent; Adult; Aged; Aged, 80 and over; Attitude to Health; Female; Focus Groups; Health Services Accessibility; Health Services Needs and Demand; Health Services Research; Humans; Interviews as Topic; Male; Middle Aged; Minority Groups; Outcome Assessment, Health Care; Patient-Centered Care; Physician-Patient Relations; Quality of Life; Research; Vulnerable Populations; Young Adult
PubMed: 27206519
DOI: 10.1111/1475-6773.12505 -
American Journal of Health-system... May 2021Health-system specialty pharmacies (HSSPs) provide high-quality, efficient, and collaborative care to patients receiving specialty therapy. Despite proven benefits of...
PURPOSE
Health-system specialty pharmacies (HSSPs) provide high-quality, efficient, and collaborative care to patients receiving specialty therapy. Despite proven benefits of the integrated model, manufacturer and payer restrictions challenge the viability and utility of HSSPs. Vanderbilt Specialty Pharmacy developed a health outcomes and research program to measure and communicate the value of this model, drive improvement in patient care delivery, and advocate for recognition of HSSP pharmacists' role in patient care. The purpose of this descriptive report is to describe the development and results of this program.
SUMMARY
The health outcomes and research program began as an initiative for pharmacists to evaluate and convey the benefits they provide to patients, providers, and the health system. Early outcomes data proved useful in communicating the value of an integrated model to key stakeholders and highlighted the need to further develop research efforts. The department leadership invested resources to build a research program with dedicated personnel, engaged research experts to train pharmacists, and fostered internal and external collaborations to facilitate research efforts. As of March 2021, the health outcomes and research program team has published 33 peer-reviewed manuscripts, presented 88 posters and 7 podium presentations at national conferences, and received 4 monetary research awards. Further, the program team engages other HSSP teams to initiate and expand their own health outcomes research in an effort to empower all HSSPs in demonstrating their value.
CONCLUSIONS
The health outcomes and research program described has pioneered outcomes research among HSSPs nationwide and has proven valuable to specialty pharmacists, the health system, and key specialty pharmacy stakeholders.
Topics: Humans; Outcome Assessment, Health Care; Pharmaceutical Services; Pharmacies; Pharmacists; Pharmacy
PubMed: 33693451
DOI: 10.1093/ajhp/zxab082