10 research outputs found

    A tailored e-learning program to improve handover in the chain of emergency care: a pre-test post-test study

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    OBJECTIVE: To standardize patient handover in the chain of emergency care a handover guideline was developed. The main guideline recommendation is to use the DeMIST model (Demographics, Mechanism of Injury/illness, Injury/Illness, Signs, Treatment given) to structure pre-hospital notification and handover. To benefit from the new guideline, guideline adherence is necessary. As adherence to guidelines in emergency care settings is variable, there is a need to systematically implement the new guideline. For implementation of the guideline we developed a e-learning program tailored to influencing factors. The aim of the study was to evaluate the effectiveness of this e-learning program to improve emergency care professionals' adherence to the handover guideline during pre-hospital notification and handover in the chain of emergency medical service (EMS), emergency medical dispatch (EMD), and emergency department (ED). METHODS: A prospective pre-test post-test study was conducted. The intervention was a tailored e-learning program that was offered to ambulance crew and emergency medical dispatchers (n=88). Data on adherence included pre-hospital notifications and handovers and were collected through observations and audiotapes before and after the e-learning program. Data were analyzed using X(2)-tests and t-tests. RESULTS: In total, 78/88 (88.6%) professionals followed the e-learning program. During pre- and post-test, 146 and 169 handovers were observed respectively. After the e-learning program, no significant difference in the number of handovers with the DeMIST model (77.9% vs. 73.1%, p=.319) and the number of handovers with the correct sequence of the DeMIST model (69.9% vs. 70.5%, p=.159) existed. During the handover, the number of questions by ED staff and interruptions significantly increased from 49.0% to 68.9% and from 15.2% to 52.7% respectively (both p=.000). Most handovers were performed after patient transfer, this did not change after the intervention (p=.167). The number of handovers where information was documented during handover slightly increased from 26.9% to 29.3% (p=.632). CONCLUSIONS: The tailored e-learning program did not improve adherence to a handover guideline in the chain of emergency care. Results show a relatively high baseline adherence rate to usage and correct sequence of the DeMIST model. Improvements in the handover process can be made on the documentation of information during handover, the number of interruptions and questions, and the handover moment.status: publishe

    Quality of life of Hurler syndrome patients after successful hematopoietic stem cell transplantation

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    Hurler syndrome (HS) is a lysosomal storage disease characterized by multisystem morbidity and death in early childhood. Hematopoietic stem cell transplantation (HSCT) results in long-term survival, although with significant residual disease burden. How this residual disease affects the health-related quality of life is unknown. Therefore, we conducted a multicenter cohort study on functional and psychosocial health and compared the outcomes to normative data using the Child Health Questionnaire and Pediatric Outcomes Data Collection Instrument. Perception of carewas evaluated by the Measure of Processes of Care questionnaire. Sixty-threeHS patients receiving HSCT with at least 3 years of follow-up after HSCT were included. The influence of potential predictors was analyzed using linear regression analysis, and correlation analysis was performed using Spearman rank correlation. Functional health of transplanted HS patients was significantly diminished compared with normative data (median physical summary z score, -2.4 [range, -3.5 to -1.6]; median global functioning z score, -3.2 [range, -4.8 to -1.8]). Psychosocial health was comparable or only slightly reduced compared with healthy peers (median psychosocial summary z score, 0.15 [range, -0.7 to 0.8]). A higher obtained lysosomal enzyme level post-HSCT predicted for superior functional health. Overall, parents were satisfied with the care received. Functional health of transplanted HS patients appeared significantly more affected than psychosocial health. To improve functional health, the use of only noncarrier donors and striving to achieve full-donor chimerism, both resulting in higher enzyme levels, is advised. Assessing the health-related quality of life could play an important role in evaluating outcomes of HS patients receiving novel (cell) therapies, including autologous gene-transduced HSCT

    Quality of life of Hurler syndrome patients after successful hematopoietic stem cell transplantation

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    Hurler syndrome (HS) is a lysosomal storage disease characterized by multisystem morbidity and death in early childhood. Hematopoietic stem cell transplantation (HSCT) results in long-term survival, although with significant residual disease burden. How this residual disease affects the health-related quality of life is unknown. Therefore, we conducted a multicenter cohort study on functional and psychosocial health and compared the outcomes to normative data using the Child Health Questionnaire and Pediatric Outcomes Data Collection Instrument. Perception of carewas evaluated by the Measure of Processes of Care questionnaire. Sixty-threeHS patients receivingHSCTwith at least 3 years of follow-up afterHSCTwere included. The influence of potential predictors was analyzed using linear regression analysis, and correlation analysis was performed using Spearman rank correlation. Functional health of transplanted HS patients was significantly diminished compared with normative data (median physical summary z score, -2.4 [range, -3.5 to -1.6]; median global functioning z score, -3.2 [range, -4.8 to -1.8]). Psychosocial health was comparable or only slightly reduced compared with healthy peers (median psychosocial summary z score, 0.15 [range, 20.7 to 0.8]). A higher obtained lysosomal enzyme level post-HSCT predicted for superior functional health. Overall, parents were satisfied with the care received. Functional health of transplanted HS patients appeared significantly more affected than psychosocial health. To improve functional health, the use of only noncarrier donors and striving to achieve full-donor chimerism, both resulting in higher enzyme levels, is advised. Assessing the health-related quality of life could play an important role in evaluating outcomes of HS patients receiving novel (cell) therapies, including autologous gene-transduced HSCT

    Hematopoietic Cell Transplantation for Mucopolysaccharidosis Patients Is Safe and Effective : Results after Implementation of International Guidelines

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    Allogeneic hematopoietic cell transplantation, (HCT) is the only treatment able to prevent progressive neurodegenerative disease in a selected group of mucopolysaccharidosis (MPS) disorders. However, its use was historically limited by the high risk of graft failure and transplantation-related morbidity and mortality. Therefore; since 2005 new international HCT guidelines for MPS disorders were proposed. The survival and graft outcomes of MPS patients receiving HCT according to these guidelines in 2 European centers of expertise were,evaluated. Two consecutive conditioning regimens were used, busulfan/cyclophosphamide or, fludarabine/busulfan-based, both with exposure-targeted i.v. busulfan. A noncarrier matched sibling donor (MSD), matched unrelated cord blood (UCB), or matched unrelated donor (MUD) were considered to be preferred donors. If not available, a mismatched UCB donor was used. Participants were 62 MPS patients (56 MPS type I Hurler, 2 MPS type II, 2 MPS type III, and 2 MPS type VI) receiving HCT at median age 13.5 months (range, 3 to 44). Forty-one patients received a UCB donor, 17 MSD, and 4 MUD. High overall survival (95.2%) and event-free survival (90.3%) were achieved with only low toxicity: 13.3% acute graft-versus-host disease aGVHD) grades II to IV and 14.8% chronic GVHD (1.9% extensive). A mismatched donor predicted for lower event-free survival (P = .04). A higher age at HCT was a predictor for both aGVHD (P = .001) and chronic GVHD (P = .01). The use of a mismatched donor was a predictor for aGVHD (P = .01). Higher rates of full-donor chimerism were achieved in successfully transplanted UCB recipients compared with MSD/MUD (P = .002). If complying with the international HCT guidelines, HCT in MPS patients results in high safety and efficacy. This allows extension of HCT to more attenuated MPS types. Because a younger age at HCT is associated with reduction of HCT-related toxicity, newborn screening may further increase safety. (C) 2015 American Society for Blood and Marrow Transplantation

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    Daily intranasal palivizumab to prevent respiratory syncytial virus infection in healthy preterm infants: a phase 1/2b randomized placebo-controlled trialResearch in context

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    Summary: Background: Mucosal administration of monoclonal antibodies (mAbs) against respiratory pathogens is a promising alternative for systemic administration because lower doses are required for protection. Clinical development of mucosal mAbs is a highly active field yet clinical proof-of-concept is lacking. Methods: In this investigator-initiated, double-blind, randomized placebo-controlled trial, we evaluated intranasal palivizumab for the prevention of RSV infection in preterm infants (Dutch Trial Register NTR7378 and NTR7403). We randomized infants 1:1 to receive intranasal palivizumab (1 mg/mL) or placebo once daily during the RSV season. Any RSV infection was the primary outcome and RSV hospitalization was the key secondary outcome. The primary outcome was analyzed with a mixed effect logistic regression on the modified intention-to-treat population. Findings: We recruited 268 infants between Jan 14, 2019 and Jan 28, 2021, after which the trial was stopped for futility following the planned interim analysis. Adverse events were similar in both groups (22/134 (16.4%) palivizumab arm versus 26/134 (19.4%) placebo arm). There were 6 dropouts and 168 infants were excluded from the efficacy analyses due to absent RSV circulation during the SARS-CoV-2 pandemic. Any RSV infection was similar in infants in both groups (18/47 (38.3%) palivizumab arm versus 11/47 (23.4%) placebo arm; aOR 2.2, 95% CI 0.7–6.5). Interpretation: Daily intranasal palivizumab did not prevent RSV infection in late preterm infants. Our findings have important implications for the clinical development of mucosal mAbs, namely the necessity of timely interim analyses and further research to understand mucosal antibody half-life. Funding: Funded by the Department of Pediatrics, University Medical Centre Utrecht, the Netherlands
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