The Impact of an Acute Vaso-Occlusive Crisis on Patient Reported Outcomes: The Magic Study | oneSCDvoice
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The Impact of an Acute Vaso-Occlusive Crisis on Patient Reported Outcomes: The Magic Study

key information

source: Blood

year: 2014

authors: Julie A. Panepinto, Lauren M Beverung, T Charles Casper, Larry J. Cook, David C Brousseau


Acute vaso-occlusive crises (VOC) are the most common complication in sickle cell disease (SCD) and frequently result in hospitalization. The impact of an acute VOC on patient reported outcomes (PROs) over time is not known. It is necessary to describe the patterns of change over time of these outcomes for future interventions that aim to optimize PROs. The objective of this study was to determine the impact over time of an acute VOC on the health-related quality of life (HRQL-a specific type of PRO) of children with SCD.

A multi-center prospective trial was conducted within the setting of a randomized controlled trial (the Magnesium in Crisis or MAGiC trial) that recruited from eight United States Children’s hospitals. Eligibility criteria included children ages 5 to 21 years with hemoglobin SS disease or β0thalassemia who were admitted to the hospital for a VOC and required intravenous administration of opioids. The children were asked to complete the PedsQL SCD and Fatigue HRQL modules at four time points (T0= at time of admission to hospital, T1= 48 hours from admission, T2= approximately 7 days post discharge, T3= steady state – complete resolution of the acute event, one month or more from discharge). The primary outcomes were the SCD and Fatigue Total HRQL scores. Secondary analyses examined specific HRQL domain scores. HRQL scores range from 0-100 with higher scores representing better HRQL. HRQL scores of 60-80 represent intermediate functioning. Descriptive statistics including t-tests for paired differences in scores were performed and a multivariate analysis using a linear mixed effects model was used to determine significant differences. The following covariates were included in the model: hospital site, age, gender, hydroxyurea use, disease severity (ever had acute chest syndrome and/or hospitalized for 3 or more VOC in the prior 3 years), and steady state HRQL score.

organisation: Medical College of Wisconsin/The Children's Research Institute of the Children's Hospital of Wisconsin; University of Utah

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