The humanistic and economic burden of Dravet syndrome on caregivers and families: Implications for future research

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The humanistic and economic burden of Dravet syndrome on caregivers and families: Implications for future research is …
instance of (P31):
scholarly articleQ13442814

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P356DOI10.1016/J.YEBEH.2017.02.003
P698PubMed publication ID28431364

P50authorSameer M ZuberiQ60333066
P2093author name stringMark P Jensen
Arnold R Gammaitoni
Bradley S Galer
Sameer M Zuberi
Andreas Brunklaus
Liam Dorris
Kelly G Knupp
P2860cites workCaregiving in pediatric epilepsy: results of focus groups and implications for research and practice.Q45958182
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Caregiving burden and parent-child quality of life outcomes in neurodevelopmental conditions: the mediating role of behavioral disengagementQ48065278
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Evaluation of health-care utilization in patients with Dravet syndrome and on adjunctive treatment with stiripentol and clobazam.Q51244210
famoses: a modular educational program for children with epilepsy and their parents.Q52000945
Seizures in infants and young children: an exploratory study of family experiences and needs for information and support.Q52128306
Progressive gait deterioration in adolescents with Dravet syndrome.Q54323623
Parenting stress in mothers of children with intractable epilepsyQ80861829
Patient-reported outcome measures for cancer caregivers: a systematic reviewQ26766219
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Incidence of Dravet Syndrome in a US PopulationQ36210601
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Dravet syndrome: the main issuesQ38019274
Helping Families Cope with the Severe Stress of Dravet SyndromeQ38855483
A Randomized Controlled Trial Testing the Efficacy of the Creating Opportunities for Parent Empowerment Program for Parents of Children With Epilepsy and Other Chronic Neurological ConditionsQ38872846
The European patient with Dravet syndrome: results from a parent-reported survey on antiepileptic drug use in the European population with Dravet syndromeQ39041517
Pilot study of an integrated cognitive-behavioral and self-management intervention for youth with epilepsy and caregivers: Coping Openly and Personally with Epilepsy (COPE).Q39282984
Coping with Dravet syndrome: parental experiences with a catastrophic epilepsyQ39347494
Prognostic, clinical and demographic features in SCN1A mutation-positive Dravet syndromeQ39598983
Correlates of health-related quality of life in children with drug resistant epilepsyQ39650146
Feasibility of a pediatric cognitive-behavioral self-management intervention: Coping Openly and Personally with Epilepsy (COPE).Q39770870
Perceptions of fever and fever management practices in parents of children with Dravet syndromeQ40320538
Costs of epilepsy and cost-driving factors in children, adolescents, and their caregivers in GermanyQ40667644
The influence of socioeconomic status on health resource utilization in pediatric epilepsy in a universal health insurance system.Q40965753
Dravet syndrome in Sweden: a population-based studyQ41220933
Dravet syndrome and parent associations: the IDEA League experience with comorbid conditions, mortality, management, adaptation, and griefQ43910001
Comorbidities and predictors of health-related quality of life in Dravet syndromeQ44652755
Cognitive and adaptive evaluation of 21 consecutive patients with Dravet syndromeQ45357475
P433issuePt A
P921main subjectDravet syndromeQ1255956
P304page(s)104-109
P577publication date2017-04-17
P1433published inEpilepsy BehaviorQ15746410
P1476titleThe humanistic and economic burden of Dravet syndrome on caregivers and families: Implications for future research
P478volume70

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cites work (P2860)
Q95299078Barriers to transition from pediatric to adult care for patients with Dravet syndrome: A focus group study of caregivers
Q94572335Impact of childhood Dravet syndrome on care givers of patients with DS, a major impact on mothers
Q93349427Individualized epilepsy management: Medicines, surgery, and beyond
Q57068124Individualized treatment approaches: Fenfluramine, a novel antiepileptic medication for the treatment of seizures in Dravet syndrome
Q39451782Life impact of caregiving for severe childhood epilepsy: Results of expert panels and caregiver focus groups
Q98730942Psychosocial impact on siblings of patients with developmental and epileptic encephalopathies
Q47549947Quality of life and comorbidities associated with Dravet syndrome severity: a multinational cohort survey.
Q90248151Recent Advances in the Drug Treatment of Dravet Syndrome
Q50055683The direct and indirect costs of Dravet Syndrome

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