Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 53
Filtrar
1.
Am J Prev Med ; 66(3): 503-515, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37806365

RESUMO

INTRODUCTION: Currently, no standard workflow exists for managing patients with pathogenic variants that put them at higher risk for hereditary cancers. Therefore, follow-up care for individuals with pathogenic variants is logistically challenging and results in poor guideline adherence. To address this challenge, authors created clinical management strategies for individuals identified at high risk for hereditary cancers. METHODS: An implementation mapping approach was used to develop and evaluate the establishment of a Hereditary Cancer Clinic at the Medical University of South Carolina throughout in 2022. This approach consisted of 5 steps: conduct a needs assessment, identify objectives, select implementation strategies, produce implementation protocols, and develop an evaluation plan. The needs assessment consisted of qualitative interviews with patients (n=11), specialists (n=9), and members of the implementation team (n=4). Interviews were coded using the Consolidated Framework for Implementation Research to identify barriers and facilitators to establishment of the Hereditary Cancer Clinic. Objectives were identified, and then the team selected implementation strategies and produced implementation protocols to address concerns identified during the needs assessment. Authors conducted a second round of patient interviews to assess patient education materials. RESULTS: The research team developed a long-term evaluation plan to guide future assessment of implementation, service, and clinical/patient outcomes. CONCLUSIONS: This approach provides the opportunity for real-time enhancements and impact, with strategies for care specialists, patients, and implementation teams. Findings support ongoing efforts to improve patient management and outcomes while providing an opportunity for long-term evaluation of implementation strategies and guidelines for patients at high risk for hereditary cancers.


Assuntos
Fidelidade a Diretrizes , Neoplasias , Humanos , Pesquisa Qualitativa , Avaliação das Necessidades , Neoplasias/genética , Neoplasias/prevenção & controle , Predisposição Genética para Doença
2.
Int J Pediatr Otorhinolaryngol ; 171: 111621, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-37300964

RESUMO

OBJECTIVE: Despite established clinical practice guidelines for pediatric obstructive sleep-disordered breathing (SDB), disparities persist for this common condition. Few studies have investigated parental experiences about challenges faced in obtaining SDB evaluation and tonsillectomy for their children. To better understand parent-perceived barriers to treatment of childhood SDB, we administered a survey to assess parental knowledge of this condition. MATERIALS & METHODS: A cross-sectional survey was designed to be completed by parents of children diagnosed with SDB. Two validated surveys were administered: 1) Barriers to Care Questionnaire and 2) Obstructive Sleep-Disordered Breathing and Adenotonsillectomy Knowledge Scale for Parents. Logistic regression modeling was performed to assess for predictors of parental barriers to SDB care and knowledge. RESULTS: Eighty parents completed the survey. Mean patient age was 7.4 ± 4.6 years, and 48 (60%) patients were male. The survey response rate was 51%. Patient racial/ethnic categories included 48 (60.0%) non-Hispanic White, 18 (22.5%) non-Hispanic Black, and 14 (17.5%) Other. Parents reported challenges in the 'Pragmatic' domain, including appointment availability and cost of healthcare, as the most frequently described barrier to care. Adjusting for age, sex, race, and education, parents in the middle-income bracket ($26,500 - $79,500) had higher odds of reporting greater barriers to care than parents in the highest (>$79,500) income tier (OR 5.536, 95% CI 1.312-23.359, P = 0.020) and lowest income tier (<$26,500) (OR 3.920, 95% CI 1.096-14.020). Parents whose children had tonsillectomy (n = 40) answered only a mean 55.7% ± 13.3% of questions correctly on the knowledge scale. CONCLUSION: Pragmatic challenges were the most encountered barrier that parents reported in accessing SDB care. Families in the middle-income tier experienced the greatest barriers to SDB care compared to lower and higher income families. In general, parental knowledge of SDB and tonsillectomy was relatively low. These findings represent potential areas of improvement to target interventions to promote equitable care for SDB.


Assuntos
Disparidades em Assistência à Saúde , Pais , Síndromes da Apneia do Sono , Apneia Obstrutiva do Sono , Síndromes da Apneia do Sono/diagnóstico , Síndromes da Apneia do Sono/terapia , Apneia Obstrutiva do Sono/diagnóstico , Apneia Obstrutiva do Sono/terapia , Adenoidectomia , Tonsilectomia , Conhecimentos, Atitudes e Prática em Saúde , Pais/psicologia , Inquéritos e Questionários , Estudos Transversais , Humanos , Masculino , Feminino , Pré-Escolar , Criança , Acessibilidade aos Serviços de Saúde
3.
Otolaryngol Head Neck Surg ; 169(5): 1319-1328, 2023 11.
Artigo em Inglês | MEDLINE | ID: mdl-37161964

RESUMO

OBJECTIVE: Despite evidence-based guidelines for obstructive sleep-disordered breathing (SDB), recent studies continue to highlight treatment inequities. We used qualitative research methods to examine parental facilitators and barriers to SDB treatment. STUDY DESIGN: Qualitative interviews. SETTING: Tertiary care center. METHODS: Semistructured interviews were conducted (January-April 2022) with parents of children with SDB who underwent tonsillectomies to understand the processes of SDB detection and accessing specialty care. Interviews were conducted until thematic saturation was reached and coded using NVivo software. RESULTS: Of the 17 parents who completed the key informant interviews, 6 (35%) were of non-Hispanic black race, and 3 (17.6%) interviews were conducted in Spanish. Parents noted that the more knowledge their primary care provider (PCP) had about SDB, the easier it was to obtain a diagnostic workup (41%). The most common barrier included difficulty obtaining a specialist (otolaryngology or sleep medicine) referral from their PCP and encountering providers who were dismissive of parent-reported symptoms related to SDB, leading them to seek a second opinion or self-refer (53%). Medicaid coverage was a strong facilitator to receipt of care (59%). Three (17.6%) parents noted alienation in the process due to racial bias or language barriers. CONCLUSION: Parental interviews revealed that facilitators of SDB treatment included high clinician knowledge and perceived importance of SDB as well as Medicaid insurance which decreased financial strain. Parents also cited the attainment of referrals as a significant barrier to obtaining specialty evaluation. These findings identify potential modifiable areas to tailor future interventions for timely and equitable SDB care.


Assuntos
Síndromes da Apneia do Sono , Apneia Obstrutiva do Sono , Criança , Humanos , Síndromes da Apneia do Sono/terapia , Síndromes da Apneia do Sono/cirurgia , Apneia Obstrutiva do Sono/diagnóstico , Apneia Obstrutiva do Sono/terapia , Pais , Pesquisa Qualitativa , Acessibilidade aos Serviços de Saúde
4.
J Pediatr Surg ; 58(8): 1527-1533, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-36379748

RESUMO

BACKGROUND: Telehealth is a rapidly expanding care modality in the United States. Pediatric surgical patients often require complex care which can incur significant expenses, some of which may be alleviated by telehealth. We performed a systematic review comparing telehealth and in-person visits, and telehealth's impacts on the cost of healthcare across pediatric surgical specialties. METHODS: A systematic review was performed using the following databases: PubMed (MEDLINE), Scopus (Elsevier), and CINAHL (EBSCOHost), searched from inception to July 10th, 2022. Studies were included per the following criteria: (1) investigated a telehealth intervention for pediatric surgical care and (2) provided some metric of telehealth cost compared to an in-person visit. Non-English or studies conducted outside of the U.S. were excluded. RESULTS: Fourteen manuscripts met inclusion criteria and presented data on 7992 visits, including patients with a weighted average age of 7.5 ± 3.5 years. Most (11/14) studies used telehealth in a synchronous, or "real-time" context. Of the studies which calculated dollar cost savings for telehealth visits compared to in-person appointments we found a substantial range of savings per visit, from $48.50 to $344.64. Cost savings were frequently realized in terms of reduced travel expenditures, lower opportunity costs (e.g. lost wages), and decreased hospital labor requirements. CONCLUSIONS: This review suggests that telehealth provides cost incentives to pediatric surgical care in many scenarios, including post-operative visits and some routine clinic visits. Future work should focus on standardizing the metrics by which cost impacts are analyzed and detailing which visits are most appropriately facilitated by telehealth. LEVEL OF EVIDENCE: V.


Assuntos
Especialidades Cirúrgicas , Telemedicina , Humanos , Criança , Pré-Escolar , Atenção à Saúde , Assistência Ambulatorial
5.
J Pers Med ; 12(8)2022 Jul 27.
Artigo em Inglês | MEDLINE | ID: mdl-36013178

RESUMO

Background and Objectives: Genomic information is increasingly relevant for disease prevention and risk management at the individual and population levels. Screening healthy adults for Tier 1 conditions of hereditary breast and ovarian cancer, Lynch syndrome, and familial hypercholesterolemia using a population-based approach can help identify the 1−2% of the US population at increased risk of developing diseases associated with these conditions and tailor prevention strategies. Our objective is to report findings from an implementation science study that evaluates multi-level facilitators and barriers to implementation of the In Our DNA SC population-wide genomic screening initiative. Methods: We established an IMPACTeam (IMPlementAtion sCience for In Our DNA SC Team) to evaluate the pilot phase using principles of implementation science. We used a parallel convergent mixed methods approach to assess the Reach, Implementation, and Effectiveness outcomes from the RE-AIM implementation science framework during the pilot phase of In Our DNA SC. Quantitative assessment included the examination of frequencies and response rates across demographic categories using chi-square tests. Qualitative data were audio-recorded and transcribed, with codes developed by the study team based on the semi-structured interview guide. Results: The pilot phase (8 November 2021, to 7 March 2022) included recruitment from ten clinics throughout South Carolina. Reach indicators included enrollment rate and representativeness. A total of 23,269 potential participants were contacted via Epic's MyChart patient portal with 1976 (8.49%) enrolled. Black individuals were the least likely to view the program invitation (28.9%) and take study-related action. As a result, there were significantly higher enrollment rates among White (10.5%) participants than Asian (8.71%) and Black (3.46%) individuals (p < 0.0001). Common concerns limiting reach and participation included privacy and security of results and the impact participation would have on health or life insurance. Facilitators included family or personal history of a Tier 1 condition, prior involvement in genetic testing, self-interest, and altruism. Assessment of implementation (i.e., adherence to protocols/fidelity to protocols) included sample collection rate (n = 1104, 55.9%) and proportion of samples needing recollection (n = 19, 1.7%). There were no significant differences in sample collection based on demographic characteristics. Implementation facilitators included efficient collection processes and enthusiastic clinical staff. Finally, we assessed the effectiveness of the program, finding low dropout rates (n = 7, 0.35%), the identification of eight individuals with Tier 1 conditions (0.72% positive), and high rates of follow-up genetic counseling (87.5% completion). Conclusion: Overall, Asian and Black individuals were less engaged, with few taking any study-related actions. Strategies to identify barriers and promoters for the engagement of diverse populations are needed to support participation. Once enrolled, individuals had high rates of completing the study and follow-up engagement with genetic counselors. Findings from the pilot phase of In Our DNA SC offer opportunities for improvement as we expand the program and can provide guidance to organizations seeking to begin efforts to integrate population-wide genomic screening.

6.
J Pediatr Hematol Oncol Nurs ; 39(4): 209-220, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35791853

RESUMO

Background: Chronic red cell transfusion (CRCT) therapy is one of a few effective disease-modifying therapies for children with sickle cell anemia (SCA). CRCT is recommended for primary and secondary stroke prevention for at-risk children with SCA and is sometimes used for other disease-related complications. However, CRCT can be resource- and time-intensive for patients/families, providers, and organizations. This study was conducted to provide a comprehensive, multilevel examination of barriers and facilitators to transfusion therapy in children with SCA from health care provider and caregiver perspectives. Methods: A qualitative descriptive approach was used to conduct key informant interviews in a sample of 26 caregivers and 25 providers across the United States. Interviews were analyzed using directed content analysis with the Multilevel Ecological Model of Health as an initial coding framework and the constant comparison method. Results: Ten barrier themes and 10 facilitator themes emerged across all ecological levels. Themes most commonly occurred on the patient and organizational levels. Key barriers themes included Logistical Challenges, Obtaining and Maintaining Venous Access, Alloantibodies/Alloimmunization and Reactions, and Iron Overload and Adherence to Chelation Therapy. Key facilitator themes included Nursing and Non-nursing Staff Support, Positive Child/Family Experiences, Logistical Help and Social Resources, Blood Bank and Access to Blood, and Transfusion-Specific Resources. Discussion: The comprehensive understanding of multilevel barriers and facilitators to transfusion therapy, including the role of nursing, in children with SCA can inform strategies to improve CRCT for patients/families and providers and can also be applied by organizations seeking to implement transfusion services for SCA.


Assuntos
Anemia Falciforme , Transfusão de Eritrócitos , Anemia Falciforme/terapia , Cuidadores , Terapia por Quelação , Criança , Pessoal de Saúde , Humanos , Estados Unidos
7.
Implement Sci Commun ; 3(1): 48, 2022 Apr 28.
Artigo em Inglês | MEDLINE | ID: mdl-35484601

RESUMO

BACKGROUND: In 2021, the Medical University of South Carolina (MUSC) partnered with Helix, a population genetic testing company, to offer population-wide genomic screening for Centers for Disease Control and Preventions' Tier 1 conditions of hereditary breast and ovarian cancer, Lynch syndrome, and familial hypercholesterolemia to 100,000 individuals in South Carolina. We developed an implementation science protocol to study the multi-level factors that influence the successful implementation of the In Our DNA SC initiative. METHODS: We will use a convergent parallel mixed-methods study design to evaluate the implementation of planned strategies and associated outcomes for In Our DNA SC. Aims focus on monitoring participation to ensure engagement of diverse populations, assessing contextual factors that influence implementation in community and clinical settings, describing the implementation team's facilitators and barriers, and tracking program adaptations. We report details about each data collection tool and analyses planned, including surveys, interview guides, and tracking logs to capture and code work group meetings, adaptations, and technical assistance needs. DISCUSSION: The goal of In Our DNA SC is to provide population-level screening for actionable genetic conditions and to foster ongoing translational research. The use of implementation science can help better understand how to support the success of In Our DNA SC, identify barriers and facilitators to program implementation, and can ensure the sustainability of population-level genetic testing. The model-based components of our implementation science protocol can support the identification of best practices to streamline the expansion of similar population genomics programs at other institutions.

8.
Otolaryngol Head Neck Surg ; 166(6): 1127-1133, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-33648386

RESUMO

OBJECTIVE: To assess the impact of rural-urban residence on children with obstructive sleep-disordered breathing (SDB) who were candidates for tonsillectomy with or without adenoidectomy (TA). STUDY DESIGN: Retrospective cohort study. SETTING: Tertiary children's hospital. METHODS: A cohort of otherwise healthy children aged 2 to 18 years with a diagnosis of obstructive SDB between April 2016 and December 2018 who were recommended TA were included. Rural-urban designation was defined by ZIP code approximation of rural-urban commuting area codes. The main outcome was association of rurality with time to TA and loss to follow-up using Cox and logistic regression analyses. RESULTS: In total, 213 patients were included (mean age 6 ± 2.9 years, 117 [55%] male, 69 [32%] rural dwelling). Rural-dwelling children were more often insured by Medicaid than private insurance (P < .001) and had a median driving distance of 74.8 vs 16.8 miles (P < .001) compared to urban-dwelling patients. The majority (94.9%) eventually underwent recommended TA once evaluated by an otolaryngologist. Multivariable logistic regression analysis did not reveal any significant predictors for loss to follow-up in receiving TA. Cox regression analysis that adjusted for age, sex, insurance, and race showed that rural-dwelling patients had a 30% reduction in receipt of TA over time as compared to urban-dwelling patients (hazard ratio, 0.7; 95% CI, 0.50-0.99). CONCLUSION: Rural-dwelling patients experienced longer wait times and driving distance to TA. This study suggests that rurality should be considered a potential barrier to surgical intervention and highlights the need to further investigate geographic access as an important determinant of care in pediatric SDB.


Assuntos
Síndromes da Apneia do Sono , Apneia Obstrutiva do Sono , Tonsilectomia , Adenoidectomia , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Estudos Retrospectivos , Síndromes da Apneia do Sono/diagnóstico , Síndromes da Apneia do Sono/cirurgia , Apneia Obstrutiva do Sono/cirurgia
9.
J Pediatr Hematol Oncol ; 43(8): e1062-e1068, 2021 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-33625093

RESUMO

Stroke prevention guidelines for sickle cell anemia (SCA) recommend transcranial Doppler (TCD) screening to identify children at stroke risk; however, TCD screening implementation remains poor. This report describes results from Part 1 of the 28-site DISPLACE (Dissemination and Implementation of Stroke Prevention Looking at the Care Environment) study, a baseline assessment of TCD implementation rates. This report describes TCD implementation by consortium site characteristics; characteristics of TCDs completed; and TCD results based on age. The cohort included 5247 children with SCA, of whom 5116 were eligible for TCD implementation assessment for at least 1 study year. The majority of children were African American or Black, non-Hispanic and received Medicaid. Mean age at first recorded TCD was 5.9 and 10.5 years at study end. Observed TCD screening rates were unsatisfactory across geographic regions (mean 49.9%; range: 30.9% to 74.7%) independent of size, institution type, or previous stroke prevention trial participation. The abnormal TCD rate was 2.9%, with a median age of 6.3 years for first abnormal TCD result. Findings highlight real-world TCD screening practices and results from the largest SCA cohort to date. Data informed the part 3 implementation study for improving stroke screening and findings may inform clinical practice improvements.


Assuntos
Anemia Falciforme/complicações , Programas de Rastreamento/métodos , Acidente Vascular Cerebral/diagnóstico , Ultrassonografia Doppler Transcraniana/métodos , Adolescente , Criança , Pré-Escolar , Feminino , Seguimentos , Humanos , Masculino , Prognóstico , Estudos Retrospectivos , Acidente Vascular Cerebral/diagnóstico por imagem , Acidente Vascular Cerebral/etiologia
10.
Laryngoscope ; 131(4): E1369-E1374, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-32886373

RESUMO

OBJECTIVE: To determine the impact of race and ethnicity on 30-day complications following pediatric endoscopic sinus surgery (ESS). STUDY DESIGN: Cross-sectional cohort study. SUBJECTS AND METHODS: Patients ≤ 18 years of age undergoing ESS from 2015 to 2017 were identified in the Pediatric National Surgical Improvement Program-Pediatric database. Patient demographics, comorbidities, surgical indication, and postoperative complications were extracted. Patient race/ethnicity included non-Hispanic black, non-Hispanic white, Hispanic, and other. Multivariable logistic regression was performed to determine if race/ethnicity was a predictor of postoperative complications after ESS. RESULTS: A total of 4,337 patients were included in the study. The median age was 10.9 (interquartile range: 14.5-6.7) years. The cohort was comprised of 68.3% non-Hispanic white, 13.9% non-Hispanic black, 9.7% Hispanic, and 2.1% other. The 30-day complication rate was 3.2%, and the mortality rate was 0.3%. The rate of reoperation was 3.8%, and readmission was 4.1%. Black and Hispanic patients had higher rates of urgent operations (P = .003 and P < .001, respectively), and black patients had a higher incidence of emergent operations (P < .001) compared to their white peers. For elective ESS cases, multivariable analysis adjusting for sex, age, comorbidities, and surgical indication indicated that children of Hispanic ethnicity had increased postoperative complications (odds ratio: 1.57, 95% confidence interval: 1.04-2.37). CONCLUSION: This analysis demonstrated that black and Hispanic children disproportionately undergo more urgent and emergent ESS. Hispanic ethnicity was associated with increased 30-day complications following elective pediatric ESS. Further studies are needed to elucidate potential causes of these disparities and identify areas for improvement. LEVEL OF EVIDENCE: 3 Laryngoscope, 131:E1369-E1374, 2021.


Assuntos
Endoscopia/métodos , Procedimentos Cirúrgicos Nasais/efeitos adversos , Seios Paranasais/cirurgia , Racismo/etnologia , Adolescente , Negro ou Afro-Americano , Criança , Pré-Escolar , Comorbidade , Estudos Transversais , Procedimentos Cirúrgicos Eletivos/efeitos adversos , Procedimentos Cirúrgicos Eletivos/estatística & dados numéricos , Endoscopia/estatística & dados numéricos , Etnicidade , Feminino , Hispânico ou Latino , Humanos , Modelos Logísticos , Masculino , Avaliação de Resultados em Cuidados de Saúde , Complicações Pós-Operatórias/epidemiologia , Complicações Pós-Operatórias/etnologia , Reoperação/estatística & dados numéricos , População Branca
11.
Am J Mens Health ; 14(6): 1557988320979236, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33319609

RESUMO

The Transdisciplinary Collaborative Center (TCC) in Precision Medicine for Minority Men's Health was established at the Medical University of South Carolina (MUSC) in 2015 to address disparities in the translation of precision medicine approaches among racial minority groups. This regional consortium focuses on three primary areas: (1) the development of a consortium of regional and national partners, (2) conducting transdisciplinary research examining synergistic effects of biological, social, physiological, and clinical determinants of chronic disease risks and outcomes, and (3) dissemination and implementation of precision medicine approaches, with an emphasis on reducing disparities in health care and outcomes among minority men. Given consistent calls to better translate precision medicine approaches and the focus of this consortium on addressing disparities among minority men, we provide an overview of our experience in developing the MUSC TCC, including barriers and facilitators to conducting translational research on minority men's health issues in the context of precision medicine. Lessons learned and areas for improvement include providing enough time to create consistent partnerships and community engagement to improve recruitment and retention, identifying unique ways to engage diverse partners from across the region and nation, and better approaches to dissemination and communication for large partnerships focusing on precision medicine.


Assuntos
Saúde do Homem , Grupos Minoritários , Humanos , Masculino , Medicina de Precisão
12.
Pediatr Blood Cancer ; 67(11): e28569, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-32894002

RESUMO

BACKGROUND: Children with sickle cell anemia (SCA) are at risk for neurologic complications (stroke and silent cerebral infarct). The 2014 National Heart, Lung, and Blood Institute (NHLBI) guidelines for sickle cell disease include recommendations for initiation and maintenance of chronic red cell transfusion (CRCT) therapy for children with SCA at risk for or with ischemic stroke. The guidelines do not include well-delineated recommendations for cerebral imaging for stroke screening. The purpose of this study was to evaluate current stroke risk screening, prevention, and intervention practices amongst the Dissemination and Implementation of Stroke Prevention Looking at the Care Environment (DISPLACE) study sites. PROCEDURE: A survey was administered to DISPLACE site principal investigators to identify current stroke prevention practices relative to the Stroke Prevention Trial in Sickle Cell Anemia (STOP) study protocols and the 2014 NHLBI guidelines. Data were analyzed using descriptive statistics and line-by-line analysis of comments. RESULTS: Sites consistently applied NHLBI recommendations to initiate CRCT for ischemic stroke and abnormal transcranial Doppler ultrasound (TCD) results. Similarly, nearly all sites reported obtaining an magnetic resonance imaging (MRI)/magnetic resonance angiography (MRA) following an abnormal TCD result. There was wide variation for other indications for MRI/MRA, frequency of MRI/MRA, and other neurological indications for initiating CRCT. CONCLUSIONS: Guideline-based practices for preventing ischemic stroke through TCD and CRCT initiation were evident in nearly all sites. Wide variation in practices pertaining to MRI/MRA exists, potentially influenced by more recent stroke prevention trials. New guidelines from the American Society of Hematology were published in April 2020, which may reduce practice variation.


Assuntos
Anemia Falciforme/complicações , Transfusão de Sangue/métodos , Programas de Rastreamento/métodos , Doenças do Sistema Nervoso/diagnóstico , Doenças do Sistema Nervoso/terapia , Neuroimagem/métodos , Padrões de Prática Médica/estatística & dados numéricos , Criança , Pré-Escolar , Feminino , Seguimentos , Humanos , Imageamento por Ressonância Magnética , Masculino , Doenças do Sistema Nervoso/etiologia , Prognóstico
13.
Pediatr Blood Cancer ; 67(4): e28172, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-31925913

RESUMO

BACKGROUND: Children with sickle cell anemia (SCA) are at increased risk for stroke. In 2014, the National Heart, Lung, and Blood Institute (NHLBI) developed guidelines for stroke prevention in SCA informed by the Stroke Prevention Trial in Sickle Cell Anemia (STOP) and Optimizing Primary Stroke Prevention in Sickle Cell Anemia (STOP II) trials. The guidelines specify the use of transcranial Doppler (TCD) screening and intervention with chronic red cell transfusions (CRCT) in children with SCA who have TCD indication of high stroke risk. The purpose of this study was to describe real-world practice patterns of stroke risk screening and intervention in sites that participated in the Dissemination and Implementation of Stroke Prevention Looking at the Care Environment (DISPLACE) Consortium. PROCEDURE: Site investigators completed a survey during the formative stages of the study to evaluate their TCD practices relative to the STOP studies. Descriptive statistics and analysis of free-text comments for more complex practices were evaluated. RESULTS: Results suggested universal acceptance of annual TCD screening and initiation of CRCT following an abnormal result among the DISPLACE Consortium, consistent with NHLBI recommendations. However, there was wide variation in methods for conducting TCD screenings (eg, dedicated Doppler vs TCD imaging), classifying TCD results, and actions taken for conditional and inadequate results. CONCLUSIONS: Annual TCD screening and initiation of CRCT are critical stroke prevention practices that were universally embraced in the consortium. Additional research would be beneficial for informing clinical practices for areas in which guidelines are absent or unclear.


Assuntos
Anemia Falciforme/diagnóstico por imagem , Padrões de Prática Médica , Prevenção Primária , Acidente Vascular Cerebral , Ultrassonografia Doppler Transcraniana , Adolescente , Anemia Falciforme/terapia , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Guias de Prática Clínica como Assunto , Acidente Vascular Cerebral/diagnóstico por imagem , Acidente Vascular Cerebral/etiologia , Acidente Vascular Cerebral/prevenção & controle
14.
Prev Med ; 129S: 105848, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31703949

RESUMO

A well-documented challenge in moving public health research into practice is the extended time it takes to implement findings in clinical practice and communities. The Evidence Academy model (Rohweder et al., 2016), developed and first used in North Carolina, is a pragmatic, action-oriented model that aims to shorten this timeline by communicating cutting-edge findings directly to those who can use them and convening individuals working in a single topic area to network and plan activities for the future. The University of Pennsylvania Collaborating Center of the Cancer Prevention and Control Research Network (CPCRN) held three conferences based on the Evidence Academy model: one about prostate cancer in 2015, a second on food access and obesity prevention in 2017, and a third about tobacco control science in 2018. A diverse planning committee of stakeholders helped shape the content, focus,and format of each conference. Local and national experts presented findings to regional audiences of researchers, practitioners, government leaders, and community members. Each Evidence Academy included collaborators and speakers from other Prevention Research Centers (PRCs) and CPCRN network sites. Evaluations and outcomes indicated that the events were successful in achieving their goals and fostered ongoing relationships among attendees. This paper illustrates how the Evidence Academy model was used in a different region and describes lessons learned and follow-up activities that were initiated via the Evidence Academy and with input from participants. Lessons learned may be helpful in developing and evaluating future adaptations of the Evidence Academy model and/or the effectiveness of its components.


Assuntos
Dieta Saudável , Medicina Baseada em Evidências , Ciência da Implementação , Obesidade , Neoplasias da Próstata , Produtos do Tabaco , Humanos , Masculino , North Carolina , Obesidade/prevenção & controle , Obesidade/terapia , Estudos de Casos Organizacionais , Neoplasias da Próstata/diagnóstico , Neoplasias da Próstata/terapia , Participação dos Interessados , Produtos do Tabaco/efeitos adversos , Produtos do Tabaco/legislação & jurisprudência
15.
Transl Behav Med ; 9(4): 605-616, 2019 07 16.
Artigo em Inglês | MEDLINE | ID: mdl-30085287

RESUMO

Colorectal cancer (CRC) is one of the most common cancers in the USA. In 2017, an estimated 135,420 people were diagnosed with CRC and 50,260 people died from CRC. Several screening modalities are recommended by the United States Preventive Services Task Force (USPSTF), including annual stool tests that are usually completed at home and under-used compared with colonoscopy despite stated patient preferences for an alternative to colonoscopy. The Community Preventive Services Task Force recommends use of small media interventions (SMIs) to increase CRC screening and calls for a greater understanding of its independent impact on screening participation. This study tested whether a SMI increased the likelihood of participant return of a USPSTF recommended Fecal Immunochemical Test (FIT). In total, 804 individuals participated in a two-group, prospective randomized controlled trial. Descriptive statistics with chi-square tests compared differences in participant characteristics and return rates. Multivariable log-binomial modeling estimated combined effects of patient characteristics with FIT return rates. No differences in return rates were observed overall or by participant characteristics other than the year of enrollment. A multivariable model controlling for all covariates, found gender, insurance type, and regular place for healthcare to be significantly associated with return rates. Receipt of the SMI did not independently increase overall return rates but it may have improved the ease of completing the FIT by some participants, particularly women, those with insurance, and those with a regular place for healthcare.


Assuntos
Neoplasias Colorretais/diagnóstico , Meios de Comunicação/estatística & dados numéricos , Detecção Precoce de Câncer/métodos , Programas de Rastreamento/instrumentação , Serviços Preventivos de Saúde/organização & administração , Idoso , Conscientização , Estudos de Casos e Controles , Colonoscopia/economia , Colonoscopia/métodos , Colonoscopia/estatística & dados numéricos , Neoplasias Colorretais/epidemiologia , Meios de Comunicação/tendências , Feminino , Humanos , Incidência , Masculino , Pessoa de Meia-Idade , Sangue Oculto , Avaliação de Resultados em Cuidados de Saúde , Preferência do Paciente/psicologia , Preferência do Paciente/estatística & dados numéricos , Atenção Primária à Saúde/normas , Estudos Prospectivos , Estados Unidos/epidemiologia
16.
J Hosp Palliat Nurs ; 20(4): 325-329, 2018 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-30063623

RESUMO

Moral distress affects workplace environment, burnout, employee retention, and patient safety. Palliative care is frequently involved in complex care for patients that may cause moral distress among staff. The goal of this study was to measure change in moral distress among nurses after implementation of a policy that allows nurses to consult palliative care. Before the policy change, data were gathered via email using the Moral Distress Scale-Revised. The scale was redistributed 6 months after implementation of the consult policy. Pre and post Moral Distress Scale-Revised results were analyzed. Qualitative thematic analyses of the nurses' comments were conducted.A significantly lower percentage of nurses reported providing care for a hopelessly ill patient frequently or very frequently (34.6% vs 23.1%, P = .0397) after the policy change. However, a significantly higher percentage of nurses postpolicy reported frequently or very frequently providing less-than-optimal care because of pressures from administrators/insurers (14.4% vs 21.1%, P = .0378), caring for patients they did not feel qualified to care for (5.3% vs 14.8%, P = .0055), and working with providers who were not competent to care for the patient (13.9% vs 26.9%, P = .0059). Themes from nurses' comments were inadequate staffing, communication, ethical concerns, and lack of education.


Assuntos
Enfermeiras e Enfermeiros/psicologia , Cuidados Paliativos/métodos , Encaminhamento e Consulta/normas , Transtornos de Estresse Pós-Traumáticos/etiologia , Centros Médicos Acadêmicos/organização & administração , Centros Médicos Acadêmicos/normas , Comunicação , Ética em Enfermagem , Humanos , Satisfação no Emprego , Cuidados Paliativos/tendências , Admissão e Escalonamento de Pessoal , Pesquisa Qualitativa , Transtornos de Estresse Pós-Traumáticos/psicologia , Inquéritos e Questionários
17.
Prev Med ; 116: 51-59, 2018 11.
Artigo em Inglês | MEDLINE | ID: mdl-30149037

RESUMO

Overuse of clinical preventive services increases healthcare costs and may deprive underserved patients of necessary care. Up to 45% of cervical cancer screening is overuse. We conducted a systematic review of correlates of overuse of cervical cancer screening and interventions to reduce overuse. The search identified 25 studies (20 observational; 5 intervention). Correlates varied by the type of overuse measured (i.e., too frequent, before/after recommended age to start or stop screening, after hysterectomy), the most common correlates of overuse related to patient age (n = 7), OBGYN practice or provider (n = 5), location (n = 4), and marital status (n = 4). Six observational studies reported a decrease in overuse over time. Screening overuse decreased in all intervention studies, which used before-after designs with no control or comparison groups. Observational studies suggest potential targets for de-escalating overuse. Randomized clinical trials are needed to establish best practices for reducing overuse.


Assuntos
Detecção Precoce de Câncer/métodos , Uso Excessivo dos Serviços de Saúde , Serviços Preventivos de Saúde , Neoplasias do Colo do Útero/diagnóstico , Feminino , Humanos
18.
J Community Health ; 43(6): 1093, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-29882181

RESUMO

The original version of this article unfortunately contained a mistake. There is a typo in the coauthor name, it should be Franklin G. Berger.

19.
J Community Health ; 43(6): 1085-1092, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-29767821

RESUMO

The rates of colorectal cancer (CRC) screening in the U.S. remain below national targets, so many people at risk are not being screened. The objective of this qualitative research project was to assess patient and provider knowledge and preferences about CRC screening modalities and specifically the use of the fecal immunochemical test (FIT) as a first line screening choice. Nine focus groups were conducted with a medically underserved patient population and qualitative interviews were administered to their medical providers. Thematic analysis was used to synthesize key findings. Both providers and patients thought that the FIT would be a good option for CRC screening both as an individual choice and for an overall program approach. The test is less expensive and therefore more readily available for patients compared to colonoscopy. Overall, there was consensus that the FIT offers a reasonably priced, simple approach to CRC screening which has broad appeal to both providers and patients. Concerns identified by patients and providers included the possibility of false positives with the FIT which could be caused by test contamination or failing to perform the test properly. Patients also described feelings of disgust toward performing the FIT and difficulties in following the instructions. Study findings indicate provider and patient support for using the FIT for CRC screening at both the individual and system-wide levels of implementation. While barriers to the use of the FIT were listed, benefits of using the FIT were perceived as positive motivators to engage previously unscreened and uninsured or under-insured individuals in CRC screening.


Assuntos
Colonoscopia/estatística & dados numéricos , Neoplasias Colorretais/prevenção & controle , Serviços de Saúde Comunitária/métodos , Detecção Precoce de Câncer/estatística & dados numéricos , Pessoas sem Cobertura de Seguro de Saúde/psicologia , Sangue Oculto , Colonoscopia/psicologia , Neoplasias Colorretais/diagnóstico , Neoplasias Colorretais/psicologia , Feminino , Humanos , Área Carente de Assistência Médica , Pessoas sem Cobertura de Seguro de Saúde/estatística & dados numéricos , Pessoa de Meia-Idade , Pesquisa Qualitativa
20.
JAMA Otolaryngol Head Neck Surg ; 143(10): 975-982, 2017 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-28772297

RESUMO

Importance: No instrument exists to assess quality of life (QOL) in adult cochlear implant (CI) users that has been developed and validated using accepted scientific standards. Objective: To develop a CI-specific QOL instrument for adults in accordance with the Patient Reported Outcomes Measurement Information System (PROMIS) guidelines. Design, Setting, and Participants: As required in the PROMIS guidelines, patient focus groups participated in creation of the initial item bank. Twenty-three adult CI users were divided into 1 of 3 focus groups stratified by word recognition ability. Three moderator-led focus groups were conducted based on grounded theory on December 3, 2016. Two reviewers independently analyzed focus group recordings and transcripts, with a third reviewer available to resolve discrepancies. All data were reviewed and reported according to the Consolidated Criteria for Reporting Qualitative Research. The setting was a tertiary referral center. Main Outcomes and Measures: Coded focus group data. Results: The 23 focus group participants (10 [43%] female; mean [range] age, 68.1 [46.2-84.2] years) represented a wide range of income levels, education levels, listening modalities, CI device manufacturers, duration of CI use, and age at implantation. Data saturation was determined to be reached before the conclusion of each of the focus groups. After analysis of the transcripts, the central themes identified were communication, emotion, environmental sounds, independence and work function, listening effort, social isolation and ability to socialize, and sound clarity. Cognitive interviews were carried out on 20 adult CI patients who did not participate in the focus groups to ensure item clarity. Based on these results, the initial QOL item bank and prototype were developed. Conclusions and Relevance: Patient focus groups drawn from the target population are the preferred method of identifying content areas and domains for developing the item bank for a CI-specific QOL instrument. Compared with previously used methods, the use of patient-centered item development for a CI-specific QOL instrument will more accurately reflect patient experience and increase our understanding of how CI use affects QOL.


Assuntos
Implantes Cocleares , Transtornos da Audição/psicologia , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Adulto , Idoso , Idoso de 80 Anos ou mais , Implante Coclear , Feminino , Grupos Focais , Transtornos da Audição/terapia , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente , Reprodutibilidade dos Testes , Percepção da Fala
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA