Assessment and management of visual perceptual problems in children with cerebral palsy in Cross River State, Nigeria

Cerebral palsy (CP) is the most common physical cause of disability worldwide. Vision impairment is common in CP and is usually directly associated with the same brain injury which causes the motor problems, the 2 pathways being closely linked anatomically. This is called cerebral visual impairment and can involve ‘basic’ vision such as visual acuity or visual field or ‘higher’ visual perception or cognitive vision such as the ability to see moving targets, to pick out a target of interest from a complex scene, visual control of body movement and object recognition. These cognitive visual problems may be termed perceptual visual dysfunction (PVD) and may be missed by conventional ophthalmological assessments. However, the use of inventories of clinical history questions relating to practical aspects of visual perception in everyday life may helping detecting PVD. One example is the Insight Questions Inventory (IQI) in the assessment of PVD which has been studied in the UK, India and Bangladesh. The scores from the IQI inventory for identifying children with PVD have shown some correlation with objective tests of visual perception and with quality of life. Linking responses to the inventory with specifically tailored visual support strategies (IQI VSS), aimed at modifying environment/behaviour to compensate for, or minimize the impact of, the PVD has been piloted in the UK with encouraging results. The IQI has not been used in an African population, nor has it been tested in comparison to more open ended history taking in any population or standard care of observation. In addition, the effectiveness of the linked visual support strategies in impacting quality of life has not been tested through a randomized control trial investigation (RCT). This study was conducted in two phases (phase 1 and 2) between 2016 and 2018 in Cross River state in Nigeria, a lower middle income country. Cross River State is in the South South region of Nigeria. The research was conducted between a collaboration with the Calabar Childrens Eye Centre, Department of Ophthalmology, University of Calabar Teaching Hospital Calabar and the International Centre for Eye health (ICEH), in London. The researcher is the chief consultant pediatric Ophthalmologist and works with a multidisciplinary team. The Chief investigator from the ICEH group was Richard Bowman and Kathryn Burton as co supervisor, including a team of academic collaborators. Phase 1, involved the planning of the clinical trial by producing the trial protocol (chapter 4) and the linguistic and cultural modification of the Insight questions inventory (chapter 5). Phase 2, was a cross sectional study of children with cerebral palsy (with detailed profiling (chapter 6) and assessment of associated co-morbidity (chapter 7) including evaluation of vision (chapter 8) and a randomized controlled study with two arms to investigate whether there is an improvement in quality of life associated with suggesting and implementing visual support strategies for children with CP who have PVD, using IQI (chapter 9). The primary outcome of the trial assessed after 6 weeks was quality of life using the PedsQL 4.0 generic and PedsQL 3.0 CP modules. Secondary outcomes included subsections of the quality of life scores of the PedsQL 3.0 CP and IQI scores. Together, these studies indicate that the prevalence of CP in our population is reasonably high (2.2/1000 live births) and that CP is a multimorbid condition, including visual problems which is under-recognized by parents. The presence of co-morbidities was associated with a lower chance of school attendance. We were not able to demonstrate a significant overall improvement in quality of life through the use of IQI VSS. Further work on effective management of co-morbidities associated with cerebral palsy including vision which might help their access to education and quality of life are needed. (Chapter10).