Dravet syndrome: Effects on informal caregivers' mental health and quality of life - A systematic review.

Abstract Background Dravet syndrome (DS) is a severe developmental and epileptic encephalopathy, with predictable negative consequences for informal caregivers’ mental health. This systematic review aimed to evaluate the representativeness of depression, anxiety, and burden in these caregivers and assess their quality of life. Methods The PRISMA recommendations were followed, and a comprehensive search was conducted on PubMed/MEDLINE, WoS and Scopus databases, without date or language limits. Only observational quantitative studies on adult informal caregivers of patients with DS were considered. Results Of 876 records found, 21 full-text articles were assessed and only 6 met the inclusion criteria. The latter have mostly a cross-sectional design and include samples composed by 19 to 742 caregivers, mainly mothers/females. Most of the study participants had a Bachelor’s degree/higher educational level and were married. An important incidence of depression and anxiety on DS caregivers was reported, with significantly higher levels compared with population norms and with carers of other patients with epilepsy. Depression/anxiety were shown to be significantly associated with caregivers’ fatigue and compromised sleep quality. Other important aspects of burden have been identified; however, comparisons between studies were not possible as different scales were used. Caregivers’ health-related quality of life is also affected, with mothers reporting a worse perception on this domain. Conclusions Mental health and quality of life of DS caregivers are compromised, with mothers bearing an apparently greater burden. Studies using validated instruments for this population to assess the previously considered outcomes are needed, in order to inform the development of preventive strategies and problem-oriented interventions.