Abstract
BackgroundProgress has been made in tackling malaria however there are still over 207 million cases worldwide, the majority in children. As survival rates improve, numbers of children with long-term neurodisabling sequelae are likely to increase. Most outcome studies in cerebral malaria (CM) have focused only on body function and structure and less on outcomes within the broader framework of the International Classification of Functioning and Disability (ICF). The aim of this study was to utilise qualitative methods to identify relevant clinical outcomes in CM to support formulation of a core outcome set relevant to CM and other acquired brain injuries for use in future clinical trials.MethodsIn depth interviews with parent/caregivers (CGs) of children with/without previous CM (N = 19), and in depth interviews with health professionals (N = 18) involved in their care were conducted in community and clinical settings in and around Blantyre, Malawi. Interviews were audio taped, transcribed, translated and a thematic content analysis was conducted. Themes were categorised and placed firstly in an iterative framework derived from the data but then within the ICF framework.ResultsOutcomes perceived as important to carers and professionals fulfilled each level of the ICF. These included impairment in body function and structure (contractures, impaired mobility, visual problems, seizures, cognitive function and feeding); activity and participation outcomes (learning, self-care, relationships in school, play and activities of daily living). Other issues emerging included the social and emotional implications of CM on the family, and balancing care of children with neurodisability with demands of daily life, financial pressures, and child protection. Themes of stigma and discrimination were described; these were perceived to negatively influence care, participation and integration of carer and child into the community.ConclusionsOutcomes considered important for parents/caregivers and professionals working with children post CM cross all aspects of the ICF framework (impairment, functioning and participation). Outcomes emphasised by families and carers in cross-cultural settings must be given adequate attention when conducting clinical studies in these settings.
Highlights
Progress has been made in tackling malaria there are still over 207 million cases worldwide, the majority in children
Cerebral malaria (CM) is a serious complication of malaria. It is characterized by peripheral Plasmodium falciparum parasitaemia and profound coma without an identifiable alternative cause [1, 2]
Outcome studies to date have demonstrated that of those who survive, approximately 35% have some form of neurodisability or neurodevelopmental disorder [3,4,5,6]
Summary
Progress has been made in tackling malaria there are still over 207 million cases worldwide, the majority in children. Numbers of children with long-term neurodisabling sequelae are likely to increase. Cerebral malaria (CM) is a serious complication of malaria It is characterized by peripheral Plasmodium falciparum parasitaemia and profound coma without an identifiable alternative cause [1, 2]. Outcome studies to date have demonstrated that of those who survive, approximately 35% have some form of neurodisability (impairment in neurological function) or neurodevelopmental disorder [3,4,5,6]. Tools to assess children for these studies have concentrated mainly on specific impairments (spasticity, hemiplegia, quadriplegia) [7], cognitive function [8] or behaviour [9], and most have used Western outcome measures translated and in some cases, adapted for an African setting. Other potentially useful information, such as school attendance, socioeconomic status and maternal education, all of which can impact on a child’s neurodevelopmental outcomes have often not been considered
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