Impact of developmental and epileptic encephalopathies on caregivers: A literature review

Impact of childhood Dravet syndrome on care givers of patients with DS, a major impact on mothers

(2020) Rima Nabbout et al.   EPILEPSY & BEHAVIOR

The Inclusion of Carer Health-Related Quality of Life in National Institute for Health and Care Excellence Appraisals

(2020) Becky M. Pennington   VALUE IN HEALTH

West syndrome: a comprehensive review

(2020) Piero Pavone et al.   NEUROLOGICAL SCIENCES

Cyclin-Dependent Kinase-Like 5 Deficiency Disorder: Clinical Review

(2019) Heather E. Olson et al.   PEDIATRIC NEUROLOGY

Burden-of-illness and cost-driving factors in Dravet syndrome patients and carers: A prospective, multicenter study from Germany

(2019) Adam Strzelczyk et al.   EUROPEAN JOURNAL OF PAEDIATRIC NEUROLOGY

Perception of impact of Dravet syndrome on children and caregivers in multiple countries: looking beyond seizures

(2019) Rima Nabbout et al.   DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY

Epilepsy and genetic in Rett syndrome: A review

(2019) Francesca Felicia Operto et al.   Brain and Behavior

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

(2019) Adam Strzelczyk et al.   EPILEPSIA

Recent Advances in the Drug Treatment of Dravet Syndrome

(2019) Elaine C. Wirrell et al.   CNS DRUGS

Deciphering the concepts behind “Epileptic encephalopathy” and “Developmental and epileptic encephalopathy”

(2019) Ingrid E. Scheffer et al.   EUROPEAN JOURNAL OF PAEDIATRIC NEUROLOGY

Assessing the impact of caring for a child with Dravet syndrome: Results of a caregiver survey

(2018) Jonathan D. Campbell et al.   EPILEPSY & BEHAVIOR

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

(2018) Rima Nabbout et al.   EPILEPSY & BEHAVIOR

Caregiver burden of parents of young children with cystic fibrosis

(2018) C. Fitzgerald et al.   Journal of Cystic Fibrosis

Care-related quality of life in caregivers of children with drug-resistant epilepsy

(2018) Puneet Jain et al.   JOURNAL OF NEUROLOGY

Economic burden, work, and school productivity in individuals with tuberous sclerosis and their families

(2018) Anne M. Skalicky et al.   JOURNAL OF MEDICAL ECONOMICS

Longitudinal effects of caregiving on parental well-being: the example of Rett syndrome, a severe neurological disorder

(2018) Yuka Mori et al.   EUROPEAN CHILD & ADOLESCENT PSYCHIATRY

“Living an Obstacle Course”: A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome

(2018) Domingo Palacios-Ceña et al.   International Journal of Environmental Research and Public Health

ILAE classification of the epilepsies: Position paper of the ILAE Commission for Classification and Terminology

(2017) Ingrid E. Scheffer et al.   EPILEPSIA

How useful is the EQ-5D in assessing the impact of caring for people with Alzheimer’s disease?

(2017) Catherine Reed et al.   Health and Quality of Life Outcomes

Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life

(2017) Yuka Mori et al.   Orphanet Journal of Rare Diseases

Effect of Epilepsy on Families, Communities, and Society

(2017) Adam P. Ostendorf et al.   Seminars in Pediatric Neurology

Expert Opinion on the Management of Lennox–Gastaut Syndrome: Treatment Algorithms and Practical Considerations

(2017) J. Helen Cross et al.   Frontiers in Neurology

A qualitative investigation of recovery after femoral fracture in Rett syndrome

(2016) T. Horne et al.   CHILD CARE HEALTH AND DEVELOPMENT

“Over time it just becomes easier…”: parents of people with Angelman syndrome and Prader–Willi syndrome speak about their carer role

(2016) Allyson Thomson et al.   DISABILITY AND REHABILITATION

Correlates of health-related quality of life in children with drug resistant epilepsy

(2016) Lauryn Conway et al.   EPILEPSIA

Caretaker Quality of Life in Rett Syndrome: Disorder Features and Psychological Predictors

(2016) John T. Killian et al.   PEDIATRIC NEUROLOGY

Caring for Children With Tuberous Sclerosis Complex

(2015) Anne M. Rentz et al.   JOURNAL OF CHILD NEUROLOGY

Epileptic Encephalopathies: New Genes and New Pathways

(2014) Sahar Esmaeeli Nieh et al.   Neurotherapeutics

Anxiety, attention problems, hyperactivity, and the Aberrant Behavior Checklist in fragile X syndrome

(2013) Anne Wheeler et al.   AMERICAN JOURNAL OF MEDICAL GENETICS PART A

Health-related quality of life and depression in Rett syndrome caregivers

(2013) Adrijan Sarajlija et al.   Vojnosanitetski Pregled

Assisting a child with tuberous sclerosis complex (TSC): a qualitative deep analysis of parents’ experience and caring needs

(2013) Guendalina Graffigna et al.   BMJ Open

Caring for a child with severe intellectual disability in China: The example of Rett syndrome

(2012) Faye Lim et al.   DISABILITY AND REHABILITATION

Health and Economic Consequences of Fragile X Syndrome for Caregivers

(2012) Donald B. Bailey et al.   JOURNAL OF DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS

Caregiver's Burden and Quality of Life in Mitochondrial Disease

(2010) Kyung Ran Kim et al.   PEDIATRIC NEUROLOGY

Depression, anxiety and quality of life in parents of children with epilepsy

(2009) R. Lv et al.   ACTA NEUROLOGICA SCANDINAVICA

Lennox-Gastaut Syndrome (LGS): Development of conceptual models of health-related quality of life (HRQL) for caregivers and children

(2009) Katy Gallop et al.   SEIZURE-EUROPEAN JOURNAL OF EPILEPSY

Child and genetic variables associated with maternal adaptation to fragile X syndrome: A multidimensional analysis

(2008) Donald B. Bailey et al.   AMERICAN JOURNAL OF MEDICAL GENETICS PART A

Depression, anxiety, and quality of life in siblings of children with intractable epilepsy

(2008) Laura J. Wood et al.   EPILEPSY & BEHAVIOR

Behavior problems in children with tuberous sclerosis complex and parental stress

(2008) Claudine M.C. Kopp et al.   EPILEPSY & BEHAVIOR