Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 28
Filtrar
1.
J Patient Rep Outcomes ; 8(1): 50, 2024 May 14.
Artigo em Inglês | MEDLINE | ID: mdl-38743304

RESUMO

AIMS: Caregivers rate improved communication ability as one of the most desired outcomes for successful interventions for individuals with Angelman syndrome (AS). When measuring communication ability in clinical trials, the reliability of such measures is critical for detecting significant changes over time. This study examined the reliability of the Observed-Reported Communication Ability (ORCA) measure completed by caregivers of individuals with AS. METHODS: The ORCA measure was completed by 249 caregivers with 170 caregivers completing the ORCA measure again after 5-12 days. Generalizability theory was used to examine the following sources of measurement error in ORCA scores: concepts, subdomains, assessment points, and the interactions among those facets and the object of measurement: communication ability. Three generalizability studies were conducted to understand the reliability of the ORCA measure for different measurement designs. Decision studies were carried out to demonstrate the optimization of measurement procedures of the ORCA measure. RESULTS: G and Phi coefficients of the original measurement design exceeded the 0.80 threshold considered sufficiently reliable to make relative and absolute decisions about the communication ability of individuals with AS based on their caregivers' observed scores. The optimization procedures indicated that increasing the number of communication concepts and/or assessment points leads to more reliable estimates of communication. CONCLUSION: The ORCA measure was able to reliably distinguish different levels of communication ability among individuals with AS. Multiple assessment points and or more concepts would provide more precise estimates of an individual's communication ability but at the cost of survey fatigue.


Assuntos
Síndrome de Angelman , Cuidadores , Comunicação , Humanos , Síndrome de Angelman/diagnóstico , Cuidadores/psicologia , Reprodutibilidade dos Testes , Masculino , Feminino , Criança , Adulto , Adolescente , Pré-Escolar , Psicometria/métodos , Inquéritos e Questionários , Adulto Jovem
2.
Contemp Clin Trials ; 137: 107426, 2024 02.
Artigo em Inglês | MEDLINE | ID: mdl-38160749

RESUMO

The NIH Pragmatic Trials Collaboratory supports the design and conduct of 27 embedded pragmatic clinical trials, and many of the studies collect patient reported outcome measures as primary or secondary outcomes. Study teams have encountered challenges in the collection of these measures, including challenges related to competing health care system priorities, clinician's buy-in for adoption of patient-reported outcome measures, low adoption and reach of technology in low resource settings, and lack of consensus and standardization of patient-reported outcome measure selection and administration in the electronic health record. In this article, we share case examples and lessons learned, and suggest that, when using patient-reported outcome measures for embedded pragmatic clinical trials, investigators must make important decisions about whether to use data collected from the participating health system's electronic health record, integrate externally collected patient-reported outcome data into the electronic health record, or collect these data in separate systems for their studies.


Assuntos
Registros Eletrônicos de Saúde , Projetos de Pesquisa , Humanos , Atenção à Saúde , Medidas de Resultados Relatados pelo Paciente
3.
Eur J Paediatr Neurol ; 46: 74-81, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-37536121

RESUMO

PURPOSE: The study goal was to validate the Observer-Reported Communication Ability (ORCA) measure for use with females with Rett Syndrome (RTT). METHODS: Qualitative interviews, including concept elicitation and cognitive interviewing methods, were conducted with 19 caregivers of individuals with RTT ages 2 and older. A quantitative study was then conducted in 279 caregivers to evaluate construct validity and reliability. RESULTS: After minor modifications were made, the modified ORCA measure was well understood and captured key communication concepts. Quantitative data showed evidence for reliable scores (α = 0.90, test-retest intraclass correlation = 0.88), minimal floor and no ceiling effects, and strong correlation with the Communication and Symbolic Behaviors Scale (r = 0.73). CONCLUSIONS: This study provided initial support that the modified ORCA measure is an acceptable caregiver-reported measure of communication ability for females with RTT. Future work should include evaluation of longitudinal validity of the measure and its associations with clinician- and performance-based measures in diverse samples.


Assuntos
Síndrome de Rett , Feminino , Humanos , Síndrome de Rett/diagnóstico , Reprodutibilidade dos Testes , Cuidadores/psicologia , Índice de Gravidade de Doença
4.
J Patient Rep Outcomes ; 7(1): 82, 2023 08 15.
Artigo em Inglês | MEDLINE | ID: mdl-37581717

RESUMO

BACKGROUND & OBJECTIVES: Spontaneous intracranial hypotension (SIH) is an underdiagnosed and debilitating condition caused by a spinal cerebrospinal fluid (CSF) leak. Although SIH can lead to substantial morbidity and disability, little data exists about patients' perspectives. Without hearing directly from patients, our understanding of the full experience of having SIH is limited, as is our ability to identify and use appropriate patient-reported outcome measures (PROMs) within clinical care and research. The purpose of this study was to conduct qualitative interviews with confirmed SIH patients to fully describe their experiences and identify relevant concepts to measure. METHODS: Patients were recruited from an SIH specialty clinic at a large, U.S.-based healthcare center. Patients undergoing an initial consultation who were ≥ 18 years old, English-speaking, met the International Classification of Headache Disorders-3 criteria for SIH, and had a brain MRI with contrast that was positive for SIH were eligible to participate. During semi-structured qualitative interviews with a trained facilitator, participants were asked to describe their current SIH symptoms, how their experiences with SIH had changed over time, and the aspects of SIH that they found most bothersome. Analysts reviewed the data, created text summaries, and wrote analytic reports. RESULTS: Fifteen participants completed interviews. Common symptoms reported by patients included headache, tinnitus, ear fullness/pressure/pain, and neck or interscapular pain. Patients reported that their symptoms worsened over the course of their day and with activity. The most bothersome aspect of SIH was disruption to daily activities and limits to physical activities/exercise, which were severe. With regard to symptoms, the most bothersome and impactful included physical pain and discomfort (including headache), as well as fatigue. CONCLUSIONS: Patients reported a diverse set of symptoms that were attributed to SIH, with devastating impacts on functioning and high levels of disability. Researchers considering use of PROMs for SIH should consider inclusion of both symptom scales and aspects of functioning, and future work should focus on evaluating the validity of existing measures for this patient population using rigorous qualitative and quantitative methods in diverse samples. Additionally, these data can be used to assist clinicians in understanding the impacts of SIH on patients.


Assuntos
Hipotensão Intracraniana , Humanos , Adolescente , Hipotensão Intracraniana/complicações , Vazamento de Líquido Cefalorraquidiano , Cefaleia/diagnóstico , Dor , Dor de Orelha , Avaliação de Resultados da Assistência ao Paciente
5.
J Am Med Inform Assoc ; 30(9): 1561-1566, 2023 08 18.
Artigo em Inglês | MEDLINE | ID: mdl-37364017

RESUMO

Embedded pragmatic clinical trials (ePCTs) play a vital role in addressing current population health problems, and their use of electronic health record (EHR) systems promises efficiencies that will increase the speed and volume of relevant and generalizable research. However, as the number of ePCTs using EHR-derived data grows, so does the risk that research will become more vulnerable to biases due to differences in data capture and access to care for different subsets of the population, thereby propagating inequities in health and the healthcare system. We identify 3 challenges-incomplete and variable capture of data on social determinants of health, lack of representation of vulnerable populations that do not access or receive treatment, and data loss due to variable use of technology-that exacerbate bias when working with EHR data and offer recommendations and examples of ways to actively mitigate bias.


Assuntos
Registros Eletrônicos de Saúde , Equidade em Saúde , Estados Unidos , Humanos , Atenção à Saúde , National Institutes of Health (U.S.) , Viés
6.
Contemp Clin Trials ; 130: 107238, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-37225122

RESUMO

Embedded pragmatic clinical trials (ePCTs) are conducted during routine clinical care and have the potential to increase knowledge about the effectiveness of interventions under real world conditions. However, many pragmatic trials rely on data from the electronic health record (EHR) data, which are subject to bias from incomplete data, poor data quality, lack of representation from people who are medically underserved, and implicit bias in EHR design. This commentary examines how the use of EHR data might exacerbate bias and potentially increase health inequities. We offer recommendations for how to increase generalizability of ePCT results and begin to mitigate bias to promote health equity.


Assuntos
Registros Eletrônicos de Saúde , Equidade em Saúde , Humanos , Promoção da Saúde , Viés , Confiabilidade dos Dados
7.
Am J Intellect Dev Disabil ; 128(3): 204-218, 2023 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-37104860

RESUMO

There is a critical need for high-quality clinical outcome assessments to capture the important aspects of communication ability of individuals with Angelman syndrome (AS). To center the perspective of caregivers, our team developed the novel Observer-Reported Communication Ability (ORCA) measure using best practice guidelines, with the goal of developing a measure that could be administered to caregivers directly without the need for a certified administrator for use in clinical trials. To refine the draft measure, we conducted two rounds of cognitive interviews with 24 caregivers and a quantitative study including 249 caregivers. The results from both studies support the overall content validity, construct validity, and the reliability of the ORCA measure for individuals with AS > 2 years old for use in research contexts. Future work should explore the responsiveness of ORCA measures to changes over time in a diverse sample.


Assuntos
Síndrome de Angelman , Humanos , Pré-Escolar , Reprodutibilidade dos Testes , Cuidadores/psicologia , Comunicação
8.
Am J Intellect Dev Disabil ; 128(3): 185-203, 2023 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-37104863

RESUMO

Communication deficits have a substantial impact on quality of life for individuals with Angelman syndrome (AS) and their families, but limited qualitative work exists to support the necessary content of measures aiming to assess communication for these individuals. Following best practices for concept elicitation studies, we conducted individual qualitative interviews with caregivers and clinicians to elicit meaningful aspects of communication for individuals with AS. Caregivers were able to discuss their child's specific communication behaviors within a large number of expressive, receptive, and pragmatic functions via numerous symbolic and non-symbolic modalities. These results aligned well with published literature on communication in AS and will be used to inform the design of a novel caregiver-reported measure. Future studies on communication in individuals with AS should focus on gathering quantitative data from large samples of diverse caregivers, which would allow for estimations of the frequency of specific behaviors across the population.


Assuntos
Síndrome de Angelman , Cuidadores , Criança , Humanos , Qualidade de Vida , Comunicação
9.
JID Innov ; 3(2): 100172, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-36891031

RESUMO

The focus of this review was to determine how qualitative methods are used in dermatology research and whether published manuscripts meet current standards for qualitative research. A scoping review of manuscripts published in English between January 1, 2016 and September 22, 2021 was conducted. A coding document was developed to collect information on authors, methodology, participants, research theme, and the presence of quality criteria as outlined by the Standards for Reporting Qualitative Research. Manuscripts were included if they described original qualitative research about dermatologic conditions or topics of primary interest to dermatology. An adjacency search yielded 372 manuscripts, and after screening, 134 met the inclusion criteria. Most studies utilized interviews or focus groups, and researchers predominantly selected participants on the basis of disease status, including over 30 common and rare dermatologic conditions. Research themes frequently included patient experience of disease, development of patient-reported outcomes, and descriptions of provider and caregiver experiences. Although most authors explained their analysis and sampling strategy and included empirical data, few referenced qualitative data reporting standards. Missed opportunities for qualitative methods in dermatology include examination of health disparities, exploration of surgical and cosmetic dermatology experiences, and determination of the lived experience of and provider attitudes toward diverse patient populations.

10.
Contemp Clin Trials ; 113: 106651, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34998990

RESUMO

BACKGROUND: Ethical responsibilities for monitoring and responding to signals of behavioral and mental health risk (such as suicidal ideation, opioid use disorder, or depression) in general clinical research have been described; however, pragmatic clinical trials (PCTs) raise new contextual challenges. METHODS: We use our experience with the PRISM (Pragmatic and Implementation Studies for the Management of Pain to Reduce Opioid Prescribing) program, which is a component of the Helping End Addiction Long-Term (HEAL) Initiative, to provide examples of research studying nonpharmacologic interventions for pain that collect sensitive data. Members of the PRISM Ethics and Regulatory Core and Patient-Centered Outcome Core Working Group discussed and refined considerations and recommendations. RESULTS: PCT researchers can help identify the extent of their ethical obligations to monitor and respond to signals of potential behavioral and mental health risks by understanding and aligning stakeholder expectations; considering characteristics of the trial and study population; defining triggers, thresholds, and responsibilities for action; identifying appropriate response mechanisms and capabilities; integrating responses with health systems; and addressing privacy. Based on such an assessment, researchers should proactively identify if, when, and how a response will be triggered. Doing so necessitates that stakeholders understand their roles in managing such risks. Finally, consent forms and other study disclosures should clearly state what if any responses might be taken. CONCLUSION: Early and ongoing bi-directional communication with relevant stakeholders is critical to identifying and meeting the ethical challenges for PCTs when managing and responding to behavioral and mental health data that potentially signal elevated risk to individuals.


Assuntos
Analgésicos Opioides , Ecossistema , Humanos , Padrões de Prática Médica , Ensaios Clínicos Pragmáticos como Assunto , Projetos de Pesquisa , Pesquisadores
11.
Rheum Dis Clin North Am ; 48(1): 15-29, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34798944

RESUMO

For children with pediatric rheumatic diseases (PRDs), the inclusion of patient-reported outcomes (PROs) is critical to inform decision making in health care delivery and research settings. PROs are direct reports from a child on their health status, without interpretation by anyone else. PROs improve understanding of the patient experience, allow clinicians to provide patient-centered care, and add value to clinical trials. When PROs cannot be collected directly from the patient, caregiver-proxy reports can provide important information on the child's more observable symptoms and functioning. In this article, we describe the current use of PROs in specific PRDs, align current research with best practice recommendations for both clinical care and research settings, highlight exciting new developments, and identify areas for future research.


Assuntos
Medidas de Resultados Relatados pelo Paciente , Doenças Reumáticas , Criança , Atenção à Saúde , Nível de Saúde , Humanos , Assistência Centrada no Paciente , Doenças Reumáticas/epidemiologia , Doenças Reumáticas/terapia
12.
J Am Med Inform Assoc ; 28(12): 2626-2640, 2021 11 25.
Artigo em Inglês | MEDLINE | ID: mdl-34597383

RESUMO

OBJECTIVE: We identified challenges and solutions to using electronic health record (EHR) systems for the design and conduct of pragmatic research. MATERIALS AND METHODS: Since 2012, the Health Care Systems Research Collaboratory has served as the resource coordinating center for 21 pragmatic clinical trial demonstration projects. The EHR Core working group invited these demonstration projects to complete a written semistructured survey and used an inductive approach to review responses and identify EHR-related challenges and suggested EHR enhancements. RESULTS: We received survey responses from 20 projects and identified 21 challenges that fell into 6 broad themes: (1) inadequate collection of patient-reported outcome data, (2) lack of structured data collection, (3) data standardization, (4) resources to support customization of EHRs, (5) difficulties aggregating data across sites, and (6) accessing EHR data. DISCUSSION: Based on these findings, we formulated 6 prerequisites for PCTs that would enable the conduct of pragmatic research: (1) integrate the collection of patient-centered data into EHR systems, (2) facilitate structured research data collection by leveraging standard EHR functions, usable interfaces, and standard workflows, (3) support the creation of high-quality research data by using standards, (4) ensure adequate IT staff to support embedded research, (5) create aggregate, multidata type resources for multisite trials, and (6) create re-usable and automated queries. CONCLUSION: We are hopeful our collection of specific EHR challenges and research needs will drive health system leaders, policymakers, and EHR designers to support these suggestions to improve our national capacity for generating real-world evidence.


Assuntos
Atenção à Saúde , Software , Registros Eletrônicos de Saúde , Humanos , Relatório de Pesquisa , Inquéritos e Questionários
13.
J Health Care Poor Underserved ; 32(2): 830-842, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34120980

RESUMO

Malaria is one of the top 10 leading causes of death in Uganda. Short-term medical missions (STMMs) to address unmet medical needs in lower-resource settings are increasingly common. Th is study evaluates correlations between patient and clinician variables and accurate malaria diagnosis by providers on STMMs to Uganda. We surveyed 18 U.S. providers and performed a retrospective chart review of 246 patients seen by those providers on STMMs in Uganda between 2016 to 2017. All providers recorded their clinical level of suspicion for patients who met inclusion criteria, following which a rapid diagnostic test (RDT) was performed. Fift y-four percent of the patients tested positive for malaria. Level of provider accuracy ranged widely from 30.0% to 95.5% correct. Our fi ndings reaffirm that signs and symptoms of malaria are too nonspecifi c to be used alone without diagnostic testing by STMM providers. Pre-departure STMM training on malaria diagnosis is a necessity.


Assuntos
Malária , Missões Médicas , Testes Diagnósticos de Rotina , Humanos , Malária/diagnóstico , Estudos Retrospectivos , Uganda
14.
PM R ; 13(10): 1136-1147, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-33400849

RESUMO

BACKGROUND: Training opportunities to pursue a career in pediatric rehabilitation medicine (PRM) have evolved over the last 40 years, with the most recent change being the development and accreditation of PRM fellowships and subspecialty certification in PRM. Currently the American Board of Physical Medicine & Rehabilitation (ABPMR) requires all candidates for PRM subspecialty certification to have completed a physical medicine and rehabilitation (PM&R) residency. The small number of certified PRM physicians has prompted debate within the field about permitting pediatricians to enter PRM fellowships without having to complete a PM&R residency. OBJECTIVE: To assess the level of interest within the field of PRM in creating a pathway to PRM for pediatricians. DESIGN: Survey of pediatric physiatrists in the United States in 2017. SETTING: National. PARTICIPANTS: Pediatric physiatrists. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASUREMENTS: Favorability toward pediatricians becoming certified in PRM. RESULTS: Most respondents (62%) were in favor of pediatricians having the opportunity to pursue training in PRM, with an increase in support (70%) after being introduced to workforce issues in PRM. Training time for pediatricians was the largest concern identified by respondents who were not in favor (80%), with additional themes identified including dilution of the essence of the field and operationalization issues. CONCLUSIONS: With a small number of practicing pediatric physiatrists, the growing number of children with disabilities, and the limited access to our services, most pediatric physiatrists are in agreement that it is time to consider the opportunity to expand the PRM workforce by creating a fellowship pathway to subspecialty board certification in PRM after pediatric residency.


Assuntos
Internato e Residência , Fisiatras , Medicina Física e Reabilitação , Criança , Bolsas de Estudo , Humanos , Pediatras , Estados Unidos
15.
JMIR Public Health Surveill ; 6(3): e22060, 2020 09 15.
Artigo em Inglês | MEDLINE | ID: mdl-32930670

RESUMO

BACKGROUND: The success of behavioral interventions and policies designed to reduce the impact of the COVID-19 pandemic depends on how well individuals are informed about both the consequences of infection and the steps that should be taken to reduce the impact of the disease. OBJECTIVE: The aim of this study was to investigate associations between public knowledge about COVID-19, adherence to social distancing, and public trust in government information sources (eg, the US Centers for Disease Control and Prevention), private sources (eg, FOX and CNN), and social networks (eg, Facebook and Twitter) to inform future policies related to critical information distribution. METHODS: We conducted a cross-sectional survey (N=1243) between April 10 and 14, 2020. Data collection was stratified by US region and other demographics to ensure representativeness of the sample. RESULTS: Government information sources were the most trusted among the public. However, we observed trends in the data that suggested variations in trust by age and gender. White and older populations generally expressed higher trust in government sources, while non-White and younger populations expressed higher trust in private sources (eg, CNN) and social networks (eg, Twitter). Trust in government sources was positively associated with accurate knowledge about COVID-19 and adherence to social distancing. However, trust in private sources (eg, FOX and CNN) was negatively associated with knowledge about COVID-19. Similarly, trust in social networks (eg, Facebook and Twitter) was negatively associated with both knowledge and adherence to social distancing. CONCLUSIONS: During pandemics such as the COVID-19 outbreak, policy makers should carefully consider the quality of information disseminated through private sources and social networks. Furthermore, when disseminating urgent health information, a variety of information sources should be used to ensure that diverse populations have timely access to critical knowledge.


Assuntos
COVID-19/prevenção & controle , Controle de Doenças Transmissíveis/métodos , Infecções por Coronavirus/prevenção & controle , Conhecimentos, Atitudes e Prática em Saúde , Disseminação de Informação/métodos , Pandemias/prevenção & controle , Pneumonia Viral/prevenção & controle , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude Frente a Saúde , Betacoronavirus , COVID-19/epidemiologia , COVID-19/virologia , Infecções por Coronavirus/epidemiologia , Infecções por Coronavirus/virologia , Estudos Transversais , Feminino , Governo , Humanos , Masculino , Meios de Comunicação de Massa , Pessoa de Meia-Idade , Distanciamento Físico , Pneumonia Viral/epidemiologia , Pneumonia Viral/virologia , SARS-CoV-2 , Mídias Sociais , Estados Unidos/epidemiologia , Adulto Jovem
16.
Qual Life Res ; 29(12): 3263-3272, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-32654054

RESUMO

PURPOSE: Anchoring vignettes (AVs) are a promising measurement technique to reduce bias in patient-reported outcome (PRO) measures by helping researchers understand differences in how individuals and groups interpret response options. However, little attention has been paid to ensure quality development of AVs, and their performance has not been well assessed in pediatric populations. In this study, we explore the application of a rigorous development process for AVs based upon current standards for PROs, as well as feasibility of AVs when administered to children and adolescents. METHODS: We developed AVs using a rigorous, patient-centered mixed methods process including three phases: (1) development, (2) a pilot study, and (3) a field test. Our proposed process included the generation of a conceptual framework based on the PRO, the Localized Scleroderma Quality of Life Instrument, and numerous vignette-specific considerations. We qualitatively explored readability and comprehension of the AVs (pilot study) and then analyzed ranking patterns within vignette sets (field test). RESULTS: Four sets of four vignettes were developed. Revisions were suggested at each phase of development. The pilot study demonstrated that children ≥ 10 years had no trouble indicating understanding of the AVs. In the field test, although appropriate rankings of vignettes were generally demonstrated by participants, the percentage of tied rankings was higher than expected in this pediatric group. CONCLUSIONS: This work supports the need for rigorous developmental standards for AVs, as each stage of development suggested revisions. Additionally, AVs showed initial promise for use with pediatric populations; general feasibility and understanding were supported.


Assuntos
Medidas de Resultados Relatados pelo Paciente , Psicometria/métodos , Qualidade de Vida/psicologia , Esclerodermia Localizada/psicologia , Adolescente , Criança , Feminino , Humanos , Masculino , Projetos Piloto , Padrões de Referência , Adulto Jovem
17.
Front Neurol ; 11: 460, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32595586

RESUMO

Introduction: Unexplained heterogeneity in outcomes following pediatric traumatic brain injury (TBI) is one of the most critical barriers to the development of effective prognostic tools and therapeutics. The addition of personal biological factors to our prediction models may account for a significant portion of unexplained variance and advance the field toward precision rehabilitation medicine. The overarching goal of the Epigenetic Effects on Pediatric Traumatic Brain Injury Recovery (EETR) study is to investigate an epigenetic biomarker involved in both childhood adversity and postinjury neuroplasticity to better understand heterogeneity in neurobehavioral outcomes following pediatric TBI. Our primary hypothesis is that childhood adversity will be associated with worse neurobehavioral recovery in part through an epigenetically mediated reduction in brain-derived neurotrophic factor (BDNF) expression in response to TBI. Methods and analysis: EETR is an observational, prospective, longitudinal concurrent cohort study of children aged 3-18 years with either TBI (n = 200) or orthopedic injury (n = 100), recruited from the UPMC Children's Hospital of Pittsburgh. Participants complete study visits acutely and at 6 and 12 months postinjury. Blood and saliva biosamples are collected at all time points-and cerebrospinal fluid (CSF) when available acutely-for epigenetic and proteomic analysis of BDNF. Additional measures assess injury characteristics, pre- and postinjury child neurobehavioral functioning, childhood adversity, and potential covariates/confounders. Recruitment began in July 2017 and will occur for ~6 years, with data collection complete by mid-2023. Analyses will characterize BDNF DNA methylation and protein levels over the recovery period and investigate this novel biomarker as a potential biological mechanism underlying the known association between childhood adversity and worse neurobehavioral outcomes following pediatric TBI. Ethics and dissemination: The study received ethics approval from the University of Pittsburgh Institutional Review Board. Participants and their parents provide informed consent/assent. Research findings will be disseminated via local and international conference presentations and manuscripts submitted to peer-reviewed journals. Trial Registration: The study is registered with clinicaltrials.org (ClinicalTrials.gov Identifier: NCT04186429).

18.
Am J Phys Med Rehabil ; 99(7): 586-594, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-32209832

RESUMO

OBJECTIVE: Evidence is limited regarding clinical factors associated with ambulation status over the lifespan of individuals with myelomeningocele. We used longitudinal data from the National Spina Bifida Patient Registry to model population-level variation in ambulation over time and hypothesized that effects of clinical factors associated with ambulation would vary by age and motor level. DESIGN: A population-averaged generalized estimating equation was used to estimate the probability of independent ambulation. Model predictors included time (age), race, ethnicity, sex, insurance, and interactions between time, motor level, and the number of orthopedic, noncerebral shunt neurosurgeries, and cerebral shunt neurosurgeries. RESULTS: The study cohort included 5371 participants with myelomeningocele. A change from sacral to low-lumbar motor level initially reduced the odds of independent ambulation (OR = 0.24, 95% CI = 0.15-0.38) but became insignificant with increasing age. Surgery count was associated with decreased odds of independent ambulation (orthopedic: OR = 0.65, 95% CI = 0.50-0.85; noncerebral shunt neurosurgery: OR = 0.65, 95% CI = 0.51-0.84; cerebral shunt: OR = 0.90, 95% CI = 0.83-0.98), with increasing effects seen at lower motor levels. CONCLUSIONS: Our findings suggest that effects of several commonly accepted predictors of ambulation status vary with time. As the myelomeningocele population ages, it becomes increasingly important that study design account for this time-varying nature of clinical reality. TO CLAIM CME CREDITS: Complete the self-assessment activity and evaluation online at http://www.physiatry.org/JournalCME CME OBJECTIVES: Upon completion of this article, the reader should be able to: (1) Describe general trends in ambulation status by age in the myelomeningocele population; (2) Recognize the nuances of cause and effect underlying the relationship between surgical intervention and ambulation status; (3) Explain why variation of clinical effect over time within myelomeningocele population matters. LEVEL: Advanced ACCREDITATION: The Association of Academic Physiatrists is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.The Association of Academic Physiatrists designates this Journal-based CME activity for a maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should only claim credit commensurate with the extent of their participation in the activity.


Assuntos
Meningomielocele/epidemiologia , Limitação da Mobilidade , Paraplegia/epidemiologia , Caminhada , Adolescente , Adulto , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Derivações do Líquido Cefalorraquidiano/estatística & dados numéricos , Criança , Pré-Escolar , Estudos de Coortes , Feminino , Humanos , Cobertura do Seguro , Estudos Longitudinais , Masculino , Meningomielocele/cirurgia , Pessoa de Meia-Idade , Procedimentos Neurocirúrgicos/estatística & dados numéricos , Procedimentos Ortopédicos/estatística & dados numéricos , Sistema de Registros , Estudos Retrospectivos , Estados Unidos/epidemiologia , Adulto Jovem
19.
PM R ; 12(2): 168-179, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31397965

RESUMO

BACKGROUND: Childhood disability is on the rise and there is a national shortage of pediatric physiatrists in the United States. The 2009 Pediatric Rehabilitation Medicine Practice Survey identified concerns regarding inadequate geographic dispersion of providers, salary inequities, and limited academic competitiveness and external funding for research. OBJECTIVE: To describe the current state of the field of pediatric rehabilitation medicine. DESIGN: Survey of pediatric physiatrists in the United States in 2014 and 2017. SETTING: National. PARTICIPANTS: Pediatric physiatrists INTERVENTIONS: Not applicable. MAIN OUTCOME MEASUREMENTS: Characteristics; clinical activities, responsibilities, and comfort; academic activities; and salaries and productivity. RESULTS: In both 2014 and 2017, the majority of pediatric physiatrists who responded were women (~63%) and worked at an academic teaching hospital (~68%). Pediatric physiatrists most commonly held the title of assistant professor and were overrepresented in the Midwest. Overall, 55.8% of providers felt that access was adequate in their area whereas only 3.7% felt access was adequate across the country. In 2017, 52.5% of pediatric physiatrists participated in research or other scholarly activities with 44.2% reporting having published original research at some point in their careers. The inflation adjusted mean salary in 2014 ($227 360) was not statistically different than in 2017 ($232 634, P = .422). In both years, full professors reported the highest academic full-time salaries. Individuals having at least one leadership title also reported significantly higher average full-time salaries than individuals with no titles. CONCLUSIONS: Although gains have been made in terms of academic competitiveness and engagement in research in pediatric physiatry, there are areas of ongoing concern including large geographic practice variations with associated access to care problems, challenges with recruiting physicians to the field, and salary malalignment within the field of PM&R.


Assuntos
Mão de Obra em Saúde/estatística & dados numéricos , Fisiatras , Medicina Física e Reabilitação , Médicos , Centros Médicos Acadêmicos , Criança , Feminino , Humanos , Masculino , Pediatria/estatística & dados numéricos , Medicina Física e Reabilitação/estatística & dados numéricos , Salários e Benefícios , Inquéritos e Questionários , Estados Unidos
20.
Arch Phys Med Rehabil ; 101(5): 741-749, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-31874156

RESUMO

OBJECTIVE: To assess whether gender inequities exist for pediatric physiatrists and, if affirmative, what factors account for this difference. DESIGN: Cohort study. SETTING: Online REDCap survey administered via e-mail. PARTICIPANTS: Pediatric physiatrists practicing in the United States in 2017. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Respondents reported on their gender, training, practice type and location, leadership positions, years in practice and years at their current location, salary, research, and clinical productivity. RESULTS: Of the 307 surveys sent, 235 individuals responded, yielding a response rate of 76.5%. Pediatric physiatrists who identified as women were more likely to work part-time but were demographically similar to their colleagues who identified as men. The odds of having no leadership role were higher for women (odds ratio=2.17; P=.02) than men. Pediatric physiatrists who identified as men made on average (in US dollars ± SD) 244,798±52,906 annually compared with those who identified as women 224,497±60,756. The average annual difference in full-time salary was $20,311 in favor of those who identified as men (95% confidence interval, $3135-$37,486). The set of predictors in the multivariable model explained about 40% of the total variability in annual full-time salary (R2=0.389; adjusted R2=0.339; F15,197=7.734; P<.001). Gender was not a significant predictor in the model, but model prediction of the salaries of pediatric physiatrists who identified as men was better than model prediction of the salaries of those who identified as women. CONCLUSIONS: Despite representing a majority of the field, pediatric physiatrists who identified as women were paid less than their counterparts who identified as men. The traditional predictors associated with the salaries of men were not enough to explain salary variation among those who identified as women, thereby providing evidence of the importance of intangible and unmeasured aspects of a women's career, such as bias and institutional culture.


Assuntos
Fisiatras/estatística & dados numéricos , Médicas/economia , Salários e Benefícios/estatística & dados numéricos , Estudos de Coortes , Docentes de Medicina/estatística & dados numéricos , Feminino , Humanos , Masculino , Pediatria , Admissão e Escalonamento de Pessoal , Diretores Médicos/estatística & dados numéricos , Médicas/estatística & dados numéricos , Inquéritos e Questionários , Estados Unidos
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA
...