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OBJECTIVE: This study began as a single-blind randomized controlled trial (RCT) to investigate the efficacy and safety of electroconvulsive therapy (ECT) for severe treatment-refractory agitation in advanced dementia. The aims are to assess agitation reduction using the Cohen-Mansfield Agitation Inventory (CMAI), evaluate tolerability and safety outcomes, and explore the long-term stability of agitation reduction and global functioning. Due to challenges encountered during implementation, including recruitment obstacles and operational difficulties, the study design was modified to an open-label format and other protocol amendments were implemented. METHODS: Initially, the RCT randomized participants 1:1 to either ECT plus usual care or simulated ECT plus usual care (S-ECT) groups. As patients were enrolled, data were collected from both ECT and simulated ECT (S-ECT) patients. The study now continues in an open-label study design where all patients receive actual ECT, reducing the targeted sample size from 200 to 50 participants. RESULTS: Study is ongoing and open to enrollment. CONCLUSION: The transition of the ECT-AD study design from an RCT to open-label design exemplifies adaptive research methodologies in response to real-world challenges. Data from both the RCT and open-label phases of the study will provide a unique perspective on the role of ECT in managing severe treatment-refractory agitation in dementia, potentially influencing future clinical practices and research approaches.
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Demência , Eletroconvulsoterapia , Agitação Psicomotora , Humanos , Eletroconvulsoterapia/métodos , Agitação Psicomotora/terapia , Demência/terapia , Demência/complicações , Método Simples-Cego , Feminino , Masculino , Resultado do Tratamento , Idoso , Comportamento Motor Aberrante na DemênciaRESUMO
BACKGROUND: Metastatic Crohn's disease is a rare disorder characterized by various granulomatous skin lesions that occur independently of gastrointestinal tract involvement. However, currently there is no standardized care or specific treatment. Therapeutic approaches include immunosuppressive agents, such as corticosteroids, azathioprine, and monoclonal antibodies targeting inflammatory cytokines like tumor necrosis factor (TNF). CASE PRESENTATION: We present a case of a 29-year-old western European woman with significant blind ending abdominal subcutaneous fistulas and abscesses, who sought evaluation in the dermatology department. Histological examination revealed multiple epithelioid cell granulomas. There was no evidence of infectious or rheumatologic diseases such as sarcoidosis. The tentative diagnosis was metastatic Crohn's disease, which was not related to an intestinal manifestation of the disease. The patient responded to infliximab but had to discontinue it due to an allergic reaction. Subsequent adalimumab treatment failed to induce clinical remission; thus, therapy was switched to ustekinumab, resulting in a positive response. Written informed consent for publication of their clinical details and clinical images was obtained from the patient. For our study more than 1600 publications were screened for cases of metastatic Crohn's disease on PubMed database. 59 case reports with 171 patients were included in the analysis and evaluated for localization, diagnostic and therapeutic approaches, and complications and were summarized in this review. CONCLUSION: The successful ustekinumab treatment of a patient with metastatic Crohn's disease underscores the potential of this minimally investigated therapeutic option, highlighting the need for future treatment guidelines given the increasing prevalence of such cases.
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Doença de Crohn , Humanos , Doença de Crohn/tratamento farmacológico , Feminino , Adulto , Adalimumab/uso terapêutico , Ustekinumab/uso terapêutico , Infliximab/uso terapêutico , Fístula Cutânea/etiologia , Fístula Cutânea/tratamento farmacológico , Neoplasias Cutâneas/patologia , Neoplasias Cutâneas/secundário , Neoplasias Cutâneas/tratamento farmacológicoRESUMO
BACKGROUND: Mind-body interventions focused on intentional breathing and movement have been found to mitigate the negative effects of caregiving such as such as stress, psychosocial distress, and emotional distress associated for persons living with Alzheimer's disease and related dementias. OBJECTIVE: The objective was to assess the feasibility and acceptability and preliminary impacts of our 12-week mind body intervention "Gentle Yoga and Yogic Breathing" for caregivers of persons living with dementia on health outcomes including mutuality, depression and anxiety, loneliness and social support, quality of life, and physical function. METHODS: We conducted a single-group cohort study in which 20 caregivers were enrolled. Data were collected at baseline and at the 12-week post-intervention endpoint. RESULTS: The intervention was acceptable; 75% (n = 15/20) completed the study; 16 completed post-study questionnaires. Very few experienced technical issues; 31% (n = 3) most commonly reported as poor internet connectivity, 75% (n = 12/16) perceived a health benefit, 88% (n = 14/16) perceived improved day-to-day mood, and 100% (n = 16/16) would recommend the intervention to other caregivers. Although there was minimal change from baseline to 12 weeks, for health outcomes, there were very small improvements noted in anxiety and overall health. There were no reported adverse events. CONCLUSION: The intervention was well received and is feasible and acceptable for future studies of stress and health management interventions for caregivers of persons living with dementia.Registered with https://www.ClinicalTrials.gov (NCT03853148).
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Cuidadores , Demência , Estudos de Viabilidade , Humanos , Cuidadores/psicologia , Feminino , Masculino , Demência/psicologia , Demência/enfermagem , Idoso , Inquéritos e Questionários , Qualidade de Vida/psicologia , Estudos de Coortes , Pessoa de Meia-Idade , Terapias Mente-Corpo/métodos , Idoso de 80 Anos ou mais , Estresse Psicológico/psicologia , InternetRESUMO
ABSTRACT: Children with sickle cell anemia (SCA) are at increased risk of stroke when compared with their age-based counterparts. The Stroke Prevention Trial in Sickle Cell Anemia (STOP) previously demonstrated that with the use of transcranial Doppler ultrasound (TCD; Sickle Stroke Screen) and chronic red cell transfusion, the risk of stroke is reduced by over 90%. The STOP criteria detailed the type and method of measurement required; the time-averaged mean maximum velocity (TAMMV). Unfortunately, it has been difficult to adhere to the appropriate TAMMV measurements. The objectives of this study were to assess the quality of TCD and transcranial Doppler imaging (TCDi) reports to determine the report quality and accuracy. This is a subanalysis of the DISPLACE (Dissemination and Implementation of Stroke Prevention Looking at the Care Environment) study. Over 12 000 TCD/TCDi reports were collected during this study from 28 institutions; 391 TCDs were reviewed for this subanalysis. There were significant variations in the vessels being assessed, the velocities used to define abnormal results, and who was interpreting the scans. In 52% of reports, it was impossible to identify whether the TAMMV was what was measured. Similarly, it was only clear in 42% of reports that the TAMMV was used to interpret the examination as normal/abnormal. Given this inconsistency, we strongly recommend standardization of TCD/TCDi reporting, specialized training for those performing and interpreting the scans in the use of TCD/TCDi in patients with SCA, internal quality assurance, and institutional quality improvement work to ensure appropriate use of this potentially lifesaving technology.
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Anemia Falciforme , Acidente Vascular Cerebral , Ultrassonografia Doppler Transcraniana , Humanos , Anemia Falciforme/complicações , Anemia Falciforme/diagnóstico por imagem , Ultrassonografia Doppler Transcraniana/métodos , Acidente Vascular Cerebral/etiologia , Acidente Vascular Cerebral/prevenção & controle , Acidente Vascular Cerebral/diagnóstico por imagem , Criança , Feminino , Masculino , Adolescente , Fatores de RiscoRESUMO
INTRODUCTION: Telemedicine use in prenatal care has greatly expanded without substantial research. Optimizing user experiences can increase telemedicine's utilization to support care access. The purpose of this study was to explore patient and provider experiences using telemedicine for routine prenatal care during the COVID-19 pandemic, identifying factors affecting its utilization and satisfaction. METHODS: In this mixed methods study, online surveys and semi-structured interviews with pregnant and postpartum patients and perinatal providers across the United States were used to explore experiences with telemedicine and prenatal care during the COVID-19 pandemic. Data were collected from July to December 2021. Survey findings were analyzed using descriptive and inferential statistics, and interviews were thematically coded and analyzed, followed by mixed methods analysis. RESULTS: Results of 946 surveys (750 patients and 196 providers) and 30 interviews (15 patients and 15 providers) met inclusion for analysis. Telemedicine was utilized by 42% of patients and 72% of perinatal provider participants. The primary reason patients did not use telemedicine was because it was not offered. Patients and providers who did not use telemedicine expressed the following main concerns with virtual care: uncertainty about care quality, particularly when blood pressure and the fetal heart rate were not assessed, and potential challenges with developing trusting patient-provider relationships. Patients and providers who used telemedicine rated their experience as mild to moderate satisfaction across the 6 Telehealth Usability Questionnaire domains. Satisfaction scores were not dependent on whether physical examination components were included in virtual visits. DISCUSSION: Providing patients with the choice to use telemedicine as needed or combined with in-person visits for routine prenatal care may increase care utilization. Although not directly linked with satisfaction, interest in using telemedicine would likely increase for patients and providers concerned with care quality if blood pressure and fetal heart rate are assessed during virtual visits.
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COVID-19 , Satisfação do Paciente , Cuidado Pré-Natal , Telemedicina , Humanos , Feminino , Gravidez , COVID-19/epidemiologia , Cuidado Pré-Natal/métodos , Adulto , Estados Unidos , Inquéritos e Questionários , SARS-CoV-2 , Adulto JovemRESUMO
PURPOSE: The purpose of this study was to characterize the unmet needs and concerns of working-age caregivers of stroke survivors and to explore the relationships between these unmet needs and concerns and factors such as stroke survivor functional independence, caregiver strain, caregiver self-efficacy, caregiver perceived social support, and caregiver quality of life (QoL). DESIGN: Cross-sectional descriptive design was used in this study. METHODS: Participants ( N = 103) completed an online survey. Descriptive statistics, bivariate Pearson correlation, and linear regression analysis was performed. RESULTS: Negative correlations were found between caregiver needs and concerns and both stroke survivor functional independence and caregiver self-efficacy. Positive correlations were identified between caregiver needs and concerns and caregiver strain. In multiple regression models, stroke survivor functional independence, caregiver self-efficacy, race, and gender were statistically significantly associated with caregiver QoL. CLINICAL RELEVANCE TO THE PRACTICE OF REHABILITATION NURSING: Results of this study can inform nurses as they collaborate with informal caregivers and researchers in optimizing the rehabilitation and discharge process and aiding in the support of caregiver QoL. CONCLUSION: Working-age caregivers of stroke survivors expressed many needs and concerns. These needs, along with other factors, can affect outcomes including QoL in caregivers and stroke survivors.
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Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral , Humanos , Qualidade de Vida , Cuidadores , Estudos Transversais , Acidente Vascular Cerebral/complicações , SobreviventesRESUMO
To understand and handle the COVID-19 pandemic, digital tools and infrastructures were built in very short timeframes, resulting in stand-alone and non-interoperable solutions. To shape an interoperable, sustainable, and extensible ecosystem to advance biomedical research and healthcare during the pandemic and beyond, a short-term project called "Collaborative Data Exchange and Usage" (CODEX+) was initiated to integrate and connect multiple COVID-19 projects into a common organizational and technical framework. In this paper, we present the conceptual design, provide an overview of the results, and discuss the impact of such a project for the trade-off between innovation and sustainable infrastructures.