Dravet syndrome: Effects on informal caregivers’ mental health and quality of life – A systematic review
Tài liệu tham khảo
Scheffer, 2017, ILAE classification of the epilepsies: Position paper of the ILAE Commission for Classification and Terminology, Epilepsia, 58, 512, 10.1111/epi.13709
Samanta, 2020, Changing landscape of Dravet Syndrome Management: an overview, Neuropediatrics, 51, 135, 10.1055/s-0040-1701694
Wu, 2015, Incidence of Dravet syndrome in a US population, Pediatrics, 136, e1310, 10.1542/peds.2015-1807
Hurst, 1990, Epidemiology of severe myoclonic epilepsy of infancy, Epilepsia, 31, 397, 10.1111/j.1528-1157.1990.tb05494.x
Camfield, 2012, Helping families cope with the devastation of Dravet syndrome, Eur J Paediatr Neurol, 16, S9, 10.1016/j.ejpn.2012.04.008
Camfield, 2016, Helping families cope with the severe stress of Dravet syndrome, Can J Neurol Sci, 43, S9, 10.1017/cjn.2016.248
Nolan, 2006, Coping with Dravet syndrome: parental experiences with a catastrophic epilepsy, Dev Med Child Neurol, 48, 761, 10.1017/S0012162206001629
Gataullina, 2017, From genotype to phenotype in Dravet disease, Seizure, 44, 58, 10.1016/j.seizure.2016.10.014
Scheffer, 2019, SCN1A-related phenotypes: Epilepsy and beyond, Epilepsia, 60, S17
Jansson, 2020, Intellectual functioning and behavior in Dravet syndrome: A systematic review, Epilepsy Behav, 108, 10.1016/j.yebeh.2020.107079
Dravet C, Oguni H, Dravet syndrome (severe myoclonic epilepsy in infancy). Handbook of Clinical Neurology, 2013. 111 (3rd series): p. 627-633.
Martin, 2015, Hallucinations and delusions are frequently reported in individuals with Dravet syndrome, Epilepsy Behav, 52, 222, 10.1016/j.yebeh.2015.09.013
Cooper, 2016, Mortality in Dravet syndrome, Epilepsy Res, 128, 43, 10.1016/j.eplepsyres.2016.10.006
Nabbout, 2018, Development and content validation of a preliminary core set of patient- and caregiver-relevant outcomes for inclusion in a potential composite endpoint for Dravet Syndrome, Epilepsy Behav, 78, 232, 10.1016/j.yebeh.2017.08.029
Jensen, 2017, The humanistic and economic burden of Dravet syndrome on caregivers and families: Implications for future research, Epilepsy Behav, 70, 104, 10.1016/j.yebeh.2017.02.003
Lagae, 2019, Caregiver impact and health service use in high and low severity Dravet syndrome: A multinational cohort study, Seizure, 65, 72, 10.1016/j.seizure.2018.12.018
Villas, 2017, Dravet syndrome: Characteristics, comorbidities, and caregiver concerns, Epilepsy Behav, 74, 81, 10.1016/j.yebeh.2017.06.031
Whittington, 2018, The direct and indirect costs of Dravet Syndrome, Epilepsy Behav, 80, 109, 10.1016/j.yebeh.2017.12.034
Jensen, 2017, Life impact of caregiving for severe childhood epilepsy: Results of expert panels and caregiver focus groups, Epilepsy Behav, 74, 135, 10.1016/j.yebeh.2017.06.012
Moher, 2009, Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement, PLoS Med, 6, e1000097, 10.1371/journal.pmed.1000097
Control, C.f.D., D.C.f.D.C. Prevention %J Washington, and Prevention, Caregiving for family and friends—a public health issue. 2018: p. 10.
Study Quality Assessment Tools. [cited 2021 March 3]; Available from: https://www.nhlbi.nih.gov/health-topics/study-quality-assessment-tools.
Campbell, 2018, Assessing the impact of caring for a child with Dravet syndrome: Results of a caregiver survey, Epilepsy Behav, 80, 152, 10.1016/j.yebeh.2018.01.003
Hesdorffer, 2020, Factors associated with caregiver sleep quality related to children with rare epilepsy syndromes, J Pediatr: X, 2
Nabbout, 2020, Impact of childhood Dravet syndrome on care givers of patients with DS, a major impact on mothers, Epilepsy Behav, 108, 10.1016/j.yebeh.2020.107094
Strzelczyk, 2019, Burden-of-illness and cost-driving factors in Dravet syndrome patients and carers: A prospective, multicenter study from Germany, Eur J Paediatr Neurol, 23, 392, 10.1016/j.ejpn.2019.02.014
Strzelczyk, 2019, A multicenter, matched case-control analysis comparing burden-of-illness in Dravet syndrome to refractory epilepsy and seizure remission in patients and caregivers in Germany, Epilepsia, 60, 1697, 10.1111/epi.16099
Riechmann, 2015, Costs of epilepsy and cost-driving factors in children, adolescents, and their caregivers in Germany, Epilepsia, 56, 1388, 10.1111/epi.13089
Riechmann, 2019, Quality of life and correlating factors in children, adolescents with epilepsy, and their caregivers: A cross-sectional multicenter study from Germany, Seizure, 69, 92, 10.1016/j.seizure.2019.03.016
Willems, 2018, Trends in resource utilization and prescription of anticonvulsants for patients with active epilepsy in Germany from 2003 to 2013 - A ten-year overview, Epilepsy Behav, 83, 28, 10.1016/j.yebeh.2018.03.025
Willems, 2018, Incidence, risk factors and consequences of epilepsy-related injuries and accidents: a retrospective, single center study, Front Neurol, 9, 414, 10.3389/fneur.2018.00414
EQ-5D. EQ-5D-5L|About. 2017, April 18 [cited 2021 March 27]; Available from: https://euroqol.org/eq-5d-instruments/eq-5d-5l-about/.
HealthMeasures. Intro to PROMIS®. 2018 [cited 2021 March 27]; Available from: https://www.healthmeasures.net/explore-measurement-systems/promis/intro-to-promis.
Centers for Disease Control and Prevention. HRQOL Concepts. 2018 October 31, 2018 [cited 2021 March 27]; Available from: https://www.cdc.gov/hrqol/concept.htm.
Schnabel, 2020, Psychopathology in parents of children with autism spectrum disorder: A systematic review and meta-analysis of prevalence, Autism, 24, 26, 10.1177/1362361319844636
Arora, 2020, Health-related quality of life amongst primary caregivers of children with intellectual disability, J Intellect Disabil Res, 64, 103, 10.1111/jir.12701
Caroli, 2016, Self-reported health and gender: The role of social norms, Soc Sci Med, 153, 220, 10.1016/j.socscimed.2016.02.023
Jain, 2018, Care-related quality of life in caregivers of children with drug-resistant epilepsy, J Neurol, 265, 2221, 10.1007/s00415-018-8979-4
Hammarberg, 2016, Qualitative research methods: when to use them and how to judge them, Hum Reprod, 31, 498, 10.1093/humrep/dev334
Association, A.P., 2013
Thombs, 2018, Addressing overestimation of the prevalence of depression based on self-report screening questionnaires, CMAJ, 190, E44, 10.1503/cmaj.170691
Jones, 2016, Parental anxiety in childhood epilepsy: A systematic review, Epilepsia, 57, 529, 10.1111/epi.13326
Brambilla, 2021, Impact of the COVID-19 lockdown on patients and families with Dravet syndrome, Epilepsia Open, 6, 216, 10.1002/epi4.12464
Nevin, 2020, The information needs of parents of children with early-onset epilepsy: A systematic review, Epilepsy Behav, 112, 10.1016/j.yebeh.2020.107382
Boyce, 2020, Barriers to transition from pediatric to adult care for patients with Dravet syndrome: A focus group study of caregivers, Epilepsy Behav, 109, 10.1016/j.yebeh.2020.107096
Skluzacek, 2011, Dravet syndrome and parent associations: the IDEA League experience with comorbid conditions, mortality, management, adaptation, and grief, Epilepsia, 52, 95, 10.1111/j.1528-1167.2011.03012.x
Pfäfflin, 2012, The psychoeducational program for children with epilepsy and their parents (FAMOSES): results of a controlled pilot study and a survey of parent satisfaction over a five-year period, Epilepsy Behav, 25, 11, 10.1016/j.yebeh.2012.06.012
Puka, 2018, A systematic review of quality of life in parents of children with epilepsy, Epilepsy Behav, 82, 38, 10.1016/j.yebeh.2018.03.008
Gérain, 2019, Informal caregiver burnout? Development of a theoretical framework to understand the impact of caregiving, Front Psychol, 10, 1748, 10.3389/fpsyg.2019.01748