Aim The psychosocial impact of paediatric demyelinating disorders is poorly understood. We conducted the first known systematic review of this field, which aimed to provide greater insight into the psychological and social impact of a range of demyelinating disorders in childhood. In addition, the review aimed to explore any differences in psychosocial experience between the disorders and to provide insight into clinical and research implications.
Method Studies were identified by searching online databases and screened independently by two authors. Studies were included if they explored the psychological, emotional or social impact of paediatric demyelinating disorders. Information was extracted on the design, sample characteristics, psychosocial measures used and key findings. The findings are summarised as a narrative synthesis.
Results Twenty-four studies are included in the review. Demyelinating disorders are associated with lower quality of life, affecting young people’s emotional, social, school and behavioural functioning. There is a higher prevalence of psychiatric disorders, particularly in MS, including mood, anxiety, psychotic and behavioural disorders. There are subtle differences in the psychological presentation between demyelinating disorders, with clear gaps in the research regarding the long-term psychosocial impact of monophasic conditions.
Discussion Demyelinating disorders affect many areas of a child’s life. Medical clinicians should routinely screen for psychosocial difficulties and signpost children to appropriate psychological support. Psychologists should also play a vital role in the multi-disciplinary care of paediatric demyelinating disorders. Future research should aim to identify the long-term psychological experience of children with demyelinating disorders. Further research is also required on the difference in psychosocial impact of monophasic and relapsing disorders, to ensure that services are capturing those patients who may benefit from tailored interventions.
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