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Background: The COVID-19 pandemic necessitated a rapid transition to telemedicine, providing a critical opportunity to study telemedicine satisfaction and usability in patients with sickle cell disease (SCD). Methods: A cross-sectional survey was completed by 99 adult SCD patients who participated in at least one telemedicine visit between March and July 2020. Telemedicine satisfaction and usability were assessed with the Telemedicine Satisfaction Questionnaire (TSQ) and System Usability Scale (SUS), respectively. Preference for video visits was assessed with a 1-10 rating scale, with 10 indicating the highest preference. Measures of anxiety, depression, and patient activation were also assessed. Linear and logistic regressions were performed to evaluate for socioeconomic and psychosocial correlates of telemedicine satisfaction, usability, and preference. Results: Participants were 72% women, with a mean age of 39 years. The median (interquartile range [IQR]) TSQ was 56 (52-64) out of 70, indicating high satisfaction. The median (IQR) SUS was 72.5 (62.5-82.5) out of 100, indicating above average usability. Participants tended to prefer video visits for regular care (median [IQR] rating of 7 [5-9]) but not for management of acute pain (median [IQR] rating of 4 [2-8]). Neither satisfaction nor usability was associated with age or mental health. Telemedicine usability was positively associated with having private insurance compared with public insurance. Higher scores on both satisfaction and usability were associated with higher patient activation. Conclusions: Adults with SCD report good usability and high satisfaction with telemedicine, across multiple demographic groups. Therefore, telemedicine has valuable potential to improve access to high-quality care for these patients.
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Anemia de Células Falciformes , COVID-19 , Telemedicina , Adulto , Humanos , Femenino , Masculino , COVID-19/epidemiología , Pandemias , Estudios Transversales , Satisfacción del Paciente , Anemia de Células Falciformes/terapiaRESUMEN
BACKGROUND: Urban minority preschool children are disproportionately affected by asthma with increased asthma morbidity and mortality. It is important to understand how families manage asthma in preschool children to improve asthma control. OBJECTIVE: To evaluate family asthma management and asthma outcomes among a low-income urban minority population of Head Start preschool children. METHODS: The family asthma management system scale (FAMSS) evaluates how families manage a child's asthma. A total of 388 caregivers completed the FAMSS at baseline. Asthma outcomes were evaluated at baseline and prospectively at 6 months, including asthma control (based on the Test for Respiratory and Asthma Control in Kids), courses of oral corticosteroids (OCSs) required, and caregiver health-related quality of life (Pediatric Asthma Caregiver's Quality of Life Questionnaire [PACQLQ]). Multiple regression models evaluated the relationship between the FAMSS total score, FAMSS subscales, and asthma outcomes. RESULTS: Higher FAMSS total scores were associated with fewer courses of OCSs required (b = -0.23, P < .01) and higher PACQLQ scores (b = 0.07, P < .05). At baseline, higher integration subscale scores (b = -0.19, P < .05) were associated with fewer courses of OCSs required, and higher family response scores were associates with higher PACQLQ scores (b = 0.06, P < .05). Nevertheless, higher collaboration scores were associated with lower PACQLQ at baseline (b = -0.06, P < .05) and 6 months (b = -0.07, P < .05). CONCLUSION: Among this population of low-income minority preschool children, understanding how a family manages their child's asthma may help identify gaps for education to possibly improve caregiver asthma-related quality of life and reduce courses of OCSs. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT01519453 (https://clinicaltrials.gov/ct2/show/NCT01519453); protocol available from meakin1@jhmi.edu.
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Asma , Calidad de Vida , Asma/tratamiento farmacológico , Asma/epidemiología , Cuidadores/educación , Niño , Preescolar , Humanos , Encuestas y CuestionariosRESUMEN
Background: Well-designed clinical research needs to obtain information that is applicable to the general population. However, most current studies fail to include substantial cohorts of racial/ethnic minority populations. Such underrepresentation may lead to delayed diagnosis or misdiagnosis of disease, wide application of approved interventions without appropriate knowledge of their usefulness in certain populations, and development of recommendations that are not broadly applicable.Goals: To develop best practices for recruitment and retention of racial/ethnic minorities for clinical research in pulmonary, critical care, and sleep medicine.Methods: The American Thoracic Society convened a workshop in May of 2019. This included an international interprofessional group from academia, industry, the NIH, and the U.S. Food and Drug Administration, with expertise ranging from clinical and biomedical research to community-based participatory research methods and patient advocacy. Workshop participants addressed historical and current mistrust of scientific research, systemic bias, and social and structural barriers to minority participation in clinical research. A literature search of PubMed and Google Scholar was performed to support conclusions. The search was not a systematic review of the literature.Results: Barriers at the individual, interpersonal, institutional, and federal/policy levels were identified as limiting to minority participation in clinical research. Through the use of a multilevel framework, workshop participants proposed evidence-based solutions to the identified barriers.Conclusions: To date, minority participation in clinical research is not representative of the U.S. and global populations. This American Thoracic Society research statement identifies potential evidence-based solutions by applying a multilevel framework that is anchored in community engagement methods and patient advocacy.
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Investigación Biomédica , Cuidados Críticos , Etnicidad , Grupos Minoritarios , Selección de Paciente , Neumología , Medicina del Sueño , Política de Salud , Humanos , Defensa del Paciente , Política Pública , Sociedades Médicas , Participación de los Interesados , Confianza , Estados UnidosRESUMEN
OBJECTIVE: Asthma disproportionately affects minority groups, low income populations, and young children under 5. Head Start (HS) programs predominantly serve this high-risk population, yet staff are not trained on asthma management. The objective of this study was to assess a 5-year, multicomponent HS staff asthma education program in Baltimore City HS programs. METHODS: All HS programs were offered annual staff asthma education by a medical research team that included didactic lectures and hands-on training. Attendees received continuing education credits. HS staff were anonymously surveyed on asthma knowledge and skills and asthma medication management practices in Year 1 (preimplementation) and Year 5. RESULTS: There was an estimated response rate of 94% for Year 1 and 82% for Year 5. Compared to staff in Year 1, Year 5 staff were significantly more likely to report they had very good knowledge and skills related to asthma [odds ratio (OR) 1.63; p < 0.05] and were engaged in asthma care activities (OR 2.02; p < 0.05). Self-reported presence of asthma action plans for all children with asthma was 82% at Year 1 and increased to 89% in Year 5 (p = 0.064). CONCLUSIONS: Year 5 HS staff reported higher self-assessed knowledge and skills, self-reports of asthma medication management practices, and self-reports of asthma activities compared to Year 1 staff. HS serves high-risk children with asthma, and a multicomponent program can adequately prepare staff to manage asthma in the child care setting. Our results indicate the feasibility of providing efficacious health skill education into child care provider training to reduce asthma knowledge gaps.
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Asma/terapia , Intervención Educativa Precoz , Educación en Salud , Adolescente , Adulto , Niño , Intervención Educativa Precoz/organización & administración , Femenino , Humanos , Masculino , Evaluación de Programas y Proyectos de Salud , Instituciones AcadémicasRESUMEN
BACKGROUND: Provider adherence to clinical treatment guidelines in COPD is low. However, for patients to receive guideline-aligned care, providers not only must prescribe guideline-aligned care, but also must communicate that regimen successfully to patients to ensure medication concordance. The rate of medication concordance between patients and providers and its impact on clinical management is unknown in COPD. RESEARCH QUESTION: To examine rates of guideline alignment and medication concordance and to identify patient-level factors that place patients at risk for these types of poor disease management outcomes. STUDY DESIGN AND METHODS: This study was a secondary data analysis of the Medication Adherence Research in COPD study (2017-2023). Participants were categorized into 2017 Global Initiative for Chronic Obstructive Lung Disease (GOLD) stage. Medication regimens were classified as aligned or nonaligned with 2017 GOLD guidelines. Nonaligned regimens were stratified further into overuse and underuse categories. Medication concordance between provider-reported and participant-reported regimens was determined. Factors associated with guideline alignment and medication concordance were evaluated using logistic regression. RESULTS: Of 191 participants, 51% of provider-reported regimens were guideline aligned, with 86% of nonaligned regimens reflecting overuse with an inhaled corticosteroid (ICS). Thirty-eight percent of participants reported different regimens than their providers, of which > 80% reflected participants not reporting medications their providers reported prescribing. Participants did not report long-acting muscarinic antagonists and long-acting beta-agonists at similar rates as ICSs. Greater symptom burden and absence of a pulmonologist on the care team were associated with both guideline misalignment and medication discordance. Cognitive impairment and Black race additionally were associated with medication discordance. INTERPRETATION: Guideline misalignment and medication discordance were common and were driven by overuse of ICSs and unreported medications, respectively. The patient-level factors associated with medication discordance highlight the importance of improving patient-provider communication to improve clinical management in COPD.
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BACKGROUND: Adults with sickle cell disease (SCD) constitute a unique and vulnerable patient population with complex healthcare needs including routine follow-up visits and acute care evaluations. The COVID-19 pandemic accelerated healthcare systems' transition to providing telemedicine care. The purpose of this qualitative study was to elicit the perspectives of adults with SCD about their experience with telemedicine during the COVID-19 pandemic and to understand their preferences with respect to future telemedicine care. METHODS: Adults with SCD who had a telemedicine visit between March August 2020 and were cared for at our SCD center were eligible to participate in a one-time interview. Interviews were audio taped, transcribed, and analyzed using NVIVO software. RESULTS: Among 30 interviewed subjects, 28 transcripts were available for analysis. Analysis identified that participants compared telemedicine to in-person care across several domains including (a) how time is used, (b) personal safety, (c) pain management, and (d) maintaining caring relationships. Participants agreed that telemedicine care was most appropriate for follow-up care and less useful for painful crises or urgent needs. They expressed concerns about the need to expand telemedicine to other specialities and to ensure that privacy and technical support are provided. CONCLUSIONS: Telemedicine appeals to adults with SCD for maintenance SCD care. Decisions about in-person or telemedicine care need to be made in discussion with the patient with particular attention to pain management preferences. Ultimately, telemedicine is an option that adults with SCD would like to see continue and that has the potential to expand access to care to more geographically distant regions.
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Introduction: Medication adherence is suboptimal in childhood asthma. Children rely on caregivers to manage medication administration. It is important to detect families who are at risk for poor adherence or to identify potential areas that can assist families with better adherence to asthma medications in order to improve asthma outcomes. We investigated the association between asthma routines, family asthma management knowledge and skills, and caregiver depressive symptoms with daily controller medication adherence among Head Start preschool children in Baltimore City. Methods: Our study included 256 low-income urban preschool children who were prescribed a daily controller medication. Asthma routinization (by the Asthma Routines Questionnaire), family asthma management [by the Family Asthma Management System Scale (FAMSS)], and caregiver depressive symptoms (by the Center for Epidemiological Studies - Depression) were assessed at baseline. The medication possession ratio (MPR) to measure adherence to daily controller medications was calculated at baseline and 12 months from pharmacy fill records. Multiple regression models evaluated the relationship between asthma routinization, the FAMSS, the CES-D, and MPR. Results: Results indicated that only 7% of families had an MPR above 80% at baseline, and 24% of caregivers had clinically significant depressive symptoms. Higher asthma medication routines were associated with higher MPR at baseline (b = 0.05, p = 0.03). Higher family asthma management was associated with higher MPR at both baseline (b = 0.04, p < 0.01) and 12 months (b = 0.05, p < 0.01). Discussion: Our findings highlight the importance of family asthma management and maintaining medication routines over time to improve asthma controller medication adherence.
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Importance: Asthma is the most common chronic childhood disease, with Black children experiencing worse morbidity and mortality. It is important to evaluate the effectiveness of efficacious interventions in community settings that have the greatest likelihood of serving at-risk families. Objective: To evaluate the effectiveness of a multilevel home- and school (Head Start)-based asthma educational program compared with a Head Start-based asthma educational program alone in improving asthma outcomes in children. Design, Setting, and Participant: This randomized clinical trial included 398 children with asthma enrolled in Head Start preschool programs in Baltimore, Maryland, and their primary caregivers. Participants were recruited from April 1, 2011, to November 31, 2016, with final data collection ending December 31, 2017. Data were analyzed from March 18 to August 30, 2018. Interventions: Asthma Basic Care (ABC) family education combined with Head Start asthma education compared with Head Start asthma education alone. Main Outcomes and Measures: Asthma control as measured by the Test for Respiratory and Asthma Control in Kids (TRACK) score. Results: Among the 398 children included in the analysis (247 boys [62.1%]; mean [SD] age, 4.2 [0.7] years), the ABC plus Head Start program improved asthma control (ß = 6.26; 95% CI, 1.77 to 10.75; P < .001), reduced courses of oral corticosteroids (ß = -0.61; 95% CI, -1.13 to -0.09; P = .02), and reduced hospitalizations (odds ratio, 0.36; 95% CI, 0.21-0.61; P < .001) during a 12-month period. Conclusion and Relevance: In this randomized clinical trial, combined family and preschool asthma educational interventions improved asthma control and reduced courses of oral corticosteroids and hospitalizations. Multilevel interventions implemented in community settings that serve low-income minority families may be key to reducing disparities in asthma outcomes. Trial Registration: ClinicalTrials.gov Identifier: NCT01519453.
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Asma/terapia , Cuidadores/educación , Intervención Educativa Precoz/organización & administración , Educación del Paciente como Asunto/métodos , Servicios de Salud Escolar/organización & administración , Antiasmáticos/uso terapéutico , Asma/psicología , Baltimore , Niño , Preescolar , Femenino , Humanos , Masculino , Evaluación de Programas y Proyectos de SaludRESUMEN
PURPOSE: To understand the role of Maryland Head Start (HS) programs in asthma care and identify resources and needs to improve health outcomes. METHODS: A qualitative needs assessment was conducted with Maryland HS staff (n = 35) and parents/caregivers of enrolled children with asthma (n = 16) from all 14 grantee programs in Maryland. Focus group discussions and interviews addressed strengths and challenges in current asthma control and opportunities for integration of an asthma care program into HS services. Transcripts were thematically analyzed using a modified Framework approach. RESULTS: HS programs actively communicate with families about asthma management and facilitate communication between families and primary care providers (PCPs). Both HS staff and families reported a strong trusting relationship allowing HS staff to provide asthma management support. HS needs strong linkages with supportive services and PCP offices to engage families, address environmental triggers, and educate staff. While families across the state report interest in peer education on asthma through HS, there were some region-specific asthma care barriers for urban and rural programs. CONCLUSION: This needs assessment confirmed interest among all stakeholders in integrating asthma care through HS and identified communication strategies, supportive infrastructure, and addressing regional access to care as key elements for program design.
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Asma/terapia , Intervención Educativa Precoz , Evaluación de Necesidades , Adolescente , Adulto , Anciano , Preescolar , Comunicación , Intervención Educativa Precoz/métodos , Intervención Educativa Precoz/organización & administración , Estudios de Evaluación como Asunto , Femenino , Humanos , Entrevistas como Asunto , Masculino , Maryland , Persona de Mediana Edad , Participación de los Interesados , Adulto JovenRESUMEN
BACKGROUND: Having a medication available in the home is a prerequisite to medication adherence. Our objectives with this study are to assess asthma medication readiness among low-income urban minority preschool-aged children, and the association between beliefs about medications and medication readiness. METHODS: During a baseline assessment, a research assistant visited the home to administer a caregiver survey and observe 5 criteria in the medication readiness index: the physical presence and expiration status of medications, the counter status of metered-dose inhalers, and caregiver knowledge of medication type and dosing instructions. RESULTS: Of 288 enrolled children (mean age 4.2 years [SD: 0.7], 92% African American, 60% boys), 277 (96%) of their caregivers reported a rescue medication, but only 79% had it in the home, and only 60% met all 5 of the medication readiness criteria. Among the 161 children prescribed a controller medication, only 79% had it in the home, and only 49% met all 5 readiness criteria. Fewer worries and concerns about medications were associated with higher odds of meeting all 5 readiness criteria for controller medications. CONCLUSIONS: Inadequate availability of asthma medications in the home is a barrier to adherence among low-income urban preschoolers. Assessment of medication readiness should be incorporated into clinical care because this is an underrecognized barrier to adherence, and interventions are needed to improve medication management and knowledge to increase adherence.