Sickle-Cell Disease and Stroke: Quality of Life of Patients in a Chronic Transfusion Regimen from the Caregivers’ Perspective
| Autor: | Maria Aline Ferreira de Cerqueira, Luciana Maria Fortes Magalhães Castelo Branco Couto, Mírian Perpétua Palha Dias Parente, Juan Clinton Llerena |
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| Rok vydání: | 2022 |
| Předmět: | |
| Zdroj: | Pediatric Hematology and Oncology. :1-10 |
| ISSN: | 1521-0669 0888-0018 |
| Popis: | Strokes affect up to 10% of children with sickle-cell disease (SCD). The most commonly used strategy to prevent a first-time stroke or its recurrence is to perform periodic red blood cell transfusions. This article aims to evaluate the quality of life (QoL) of children and adolescents with SCD undergoing a chronic transfusion regimen (CTR) for stroke prophylaxis, according to their caregivers' perception. A cross-sectional study was conducted using a sociodemographic interview with an application of a validated instrument (Pediatric Quality of Life Inventory) involving 16 caregivers of patients with SCD aged18 years undergoing CTR in a reference center. The data were processed using STATA version 13.0. The caregivers were predominantly the mothers of the minors that were part of the study cohort (87.5%), an income of2 minimum wages (81.2% of cases) and8 years of schooling (56.2%). The patients had a mean age of 10.4 years, 68.8% were male, 75% were mixed-race and came from small towns and rural areas (68.8%). The overall mean QoL was 45.8 (95% confidence interval [CI] 42.5-49.2). Female patients and those aged12 years had lower levels of overall QoL. The emotional dimension of the children was the least compromised as per the caregivers' perception. The mean QoL of children with SCD on a CTR is lower than the estimated global mean QoL reported in the literature. It is possible that the occurrence of a stroke enhances the caregivers' negative perceptions about the QoL of patients with SCD. |
| Databáze: | OpenAIRE |
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