ABSTRACT
INTRODUCTION: sickle cell disease (SCD) has significant pediatric morbidity and mortality in sub-Saharan Africa, where access to therapies such as hydroxyurea and opioids is often limited. Poor disease control and Pain management adversely affects the well-being and mental health of affected children. Questionnaires have been utilized in other regions to report the quality of life (QOL) in children with SCD, but assessments from Africa are lacking. METHODS: children age 2-14 years with SCD presenting for routine outpatient consultations at Hospital Central de Maputo from June-August 2017 were offered participation. After informed consent, the Pediatric QOL Inventory (PedsQL) SCD Module was administered to all caregivers and children > 5 years. Responses were scored from 0-100, with higher scores representing better QOL. RESULTS: a total of 14 children were included, with six (43%), four (29%), two (14%), and two (14%) from the age groups of 2-4, 5-7, 8-12, and 13-14 years, respectively. Mean overall patient QOL was 65.3 and 56.0 in child and caregiver respondents. In patients > 5 years, the difference in mean overall QOL for those on/not on hydroxyurea was 0.6 (66.5-64.9) in child respondents and 15.8 (68.4-52.6) in caregiver respondents. Domains related to worry/emotions and communication scored lower in QOL than Pain-related domains for both patient and caregiver respondents. CONCLUSION: SCD has a negative impact on QOL as reported by this cohort of Mozambican pediatric patients and caregivers, with Pain being less of a concern than emotional and interpersonal issues. A comprehensive, child-focused care approach with robust psychosocial support is needed.
Subject(s)
Anemia, Sickle Cell/physiopathology , Health Services Accessibility , Pain Management/methods , Quality of Life , Adolescent , Analgesics, Opioid/administration & dosage , Anemia, Sickle Cell/drug therapy , Anemia, Sickle Cell/psychology , Caregivers/statistics & numerical data , Child , Child, Preschool , Cohort Studies , Female , Humans , Hydroxyurea/administration & dosage , Male , Mozambique , Pain/etiology , Social Support , Surveys and QuestionnairesABSTRACT
BACKGROUND: Cognitive disorders in infants and children who are vertically infected with human immunodeficiency virus (HIV) have been recognized since the inception of the epidemic. OBJECTIVE: The present study investigated neuropsychological performance in a cohort of vertically infected Brazilian children and adolescents who underwent antiretroviral therapy. The neuropsychological tasks were designed to evaluate executive function and processing speed. METHODS: Children and adolescents were recruited at a major research and treatment reference center for human immunodeficiency virus/acquired immunodeficiency syndrome (HIV) in Minas Gerais, Brazil. Forty-one individuals aged 5 to 17 years were enrolled. Twelve were mildly symptomatic (HIV-infected group, Centers for Disease Control and Prevention [CDC] class A or B), and 29 had advanced clinical disease (AIDS group, CDC class C). RESULTS: The results showed that HIV-infected children and adolescents exhibited lower performance on neuropsychological tasks than sociodemographically comparable, typically developing controls. Motor and cognitive processing speed and executive function appeared to be the most discriminative domains. CONCLUSION: HIV-infected individuals with more-advanced disease stages exhibited lower performance levels and had greater performance heterogeneity on neuropsychological tasks. Thus, the observed neuropsychological impairments, although more pronounced in participants with more advanced stages of the disease, did not correlate with the variable used (CDC stage).
INTRODUÇÃO: Comprometimentos cognitivos em crianças e adolescentes verticalmente afetadas por HIV são reconhecidos desde do início da epidemia. Objetivos: O presente estudo investigou o desempenho neuropsicológico em uma coorte de crianças e adolescentes verticalmente infectadas por HIV e que fazem uso da terapia antirretroviral no Brasil. As tarefas neuropsicológicas foram selecionadas para avaliar, principalmente, funções executivas e velocidade de processamento. MÉTODOS: As crianças e adolescentes foram recrutados em um grande centro de referência de pesquisa e tratamento para o vírus da imunodeficiência humana / síndrome da imunodeficiência adquirida (HIV / AIDS), em Minas Gerais, Brasil. Quarenta e um indivíduos com idade entre 5 e 17 anos foram selecionados. Doze estavam com sintomas leves (grupo infectado pelo HIV, Centros para Controle e Prevenção de Doenças [CDC] Classe A ou B), e 29 tiveram a doença clínica avançada (grupo AIDS, CDC classe C). RESULTADOS: Os resultados mostraram que as crianças e adolescentes infectados pelo HIV apresentaram menor desempenho em tarefas neuropsicológicas quando comparadas com o grupo controle pareado socio-demograficamente. Habilidades motoras, velocidade de processamento e função executiva são os domínios mais discriminativos. CONCLUSÃO: Indivíduos infectados pelo HIV com estágios da doença mais avançados apresentaram níveis mais baixos de desempenho e tiveram maior heterogeneidade no desempenho em tarefas neuropsicológicas. Entretanto, os prejuízos neuropsicológicos observados, apesar de se mostrarem mais pronunciados com estágios mais avançados da doença, não se correlacionaram com a variável utilizada (estágio do CDC).
Subject(s)
Humans , Acquired Immunodeficiency Syndrome , HIV , Executive Function , NeuropsychologyABSTRACT
BACKGROUND: Cognitive disorders in infants and children who are vertically infected with human immunodeficiency virus (HIV) have been recognized since the inception of the epidemic. OBJECTIVE: The present study investigated neuropsychological performance in a cohort of vertically infected Brazilian children and adolescents who underwent antiretroviral therapy. The neuropsychological tasks were designed to evaluate executive function and processing speed. METHODS: Children and adolescents were recruited at a major research and treatment reference center for human immunodeficiency virus/acquired immunodeficiency syndrome (HIV) in Minas Gerais, Brazil. Forty-one individuals aged 5 to 17 years were enrolled. Twelve were mildly symptomatic (HIV-infected group, Centers for Disease Control and Prevention [CDC] class A or B), and 29 had advanced clinical disease (AIDS group, CDC class C). RESULTS: The results showed that HIV-infected children and adolescents exhibited lower performance on neuropsychological tasks than sociodemographically comparable, typically developing controls. Motor and cognitive processing speed and executive function appeared to be the most discriminative domains. CONCLUSION: HIV-infected individuals with more-advanced disease stages exhibited lower performance levels and had greater performance heterogeneity on neuropsychological tasks. Thus, the observed neuropsychological impairments, although more pronounced in participants with more advanced stages of the disease, did not correlate with the variable used (CDC stage).
INTRODUÇÃO: Comprometimentos cognitivos em crianças e adolescentes verticalmente afetadas por HIV são reconhecidos desde do início da epidemia. OBJETIVOS: O presente estudo investigou o desempenho neuropsicológico em uma coorte de crianças e adolescentes verticalmente infectadas por HIV e que fazem uso da terapia antirretroviral no Brasil. As tarefas neuropsicológicas foram selecionadas para avaliar, principalmente, funções executivas e velocidade de processamento. MÉTODOS: As crianças e adolescentes foram recrutados em um grande centro de referência de pesquisa e tratamento para o vírus da imunodeficiência humana / síndrome da imunodeficiência adquirida (HIV / AIDS), em Minas Gerais, Brasil. Quarenta e um indivíduos com idade entre 5 e 17 anos foram selecionados. Doze estavam com sintomas leves (grupo infectado pelo HIV, Centros para Controle e Prevenção de Doenças [CDC] Classe A ou B), e 29 tiveram a doença clínica avançada (grupo AIDS, CDC classe C). RESULTADOS: Os resultados mostraram que as crianças e adolescentes infectados pelo HIV apresentaram menor desempenho em tarefas neuropsicológicas quando comparadas com o grupo controle pareado socio-demograficamente. Habilidades motoras, velocidade de processamento e função executiva são os domínios mais discriminativos. CONCLUSÃO: Indivíduos infectados pelo HIV com estágios da doença mais avançados apresentaram níveis mais baixos de desempenho e tiveram maior heterogeneidade no desempenho em tarefas neuropsicológicas. Entretanto, os prejuízos neuropsicológicos observados, apesar de se mostrarem mais pronunciados com estágios mais avançados da doença, não se correlacionaram com a variável utilizada (estágio do CDC).
