scholarly journals Guidance on Dravet Syndrome from Infant to Adult Care: Road Map for Treatment Planning in Europe

2021 ◽  
Author(s):  
Elena Cardenal‐Muñoz ◽  
Stéphane Auvin ◽  
Vicente Villanueva ◽  
J Helen Cross ◽  
Sameer M Zuberi ◽  
...  
Keyword(s):  
Treatment Planning ◽  
Dravet Syndrome ◽  
Adult Care ◽  
Road Map

scholarly journals Helping Families Cope with the Severe Stress of Dravet Syndrome

2016 ◽  
Vol 43 (S3) ◽  
pp. S9-S12 ◽  
Author(s):  
Peter Camfield ◽  
Carol Camfield ◽  
Kathleen Nolan
Keyword(s):  
Sleep Problems ◽  
Extended Family ◽  
Venous Access ◽  
Dravet Syndrome ◽  
Family Needs ◽  
Structured Interviews ◽  
Adult Care ◽  
Indwelling Catheter ◽  
Personal Time ◽  
Transition Clinic

AbstractA child with Dravet syndrome shakes family life to the core. Dravet syndrome usually has three phases: (1) up to 1-1½ years: with episodes of febrile status epilepticus but normal development; (2) age 1½ to ~6-10 years: with frequent seizures of varying types, developmental stagnation, behavioural and sleep problems; (3) after ~10 years: improvement in seizures, deteriorating gait, intellectual disability but some developmental gains. Complete seizure control is rare—simply prescribing medication is inadequate to help families. Based on structured interviews with 24 families and confirmed by more informal discussions with other families, we suggest strategies for coping with this catastrophe. A child with Dravet syndrome usually means that one parent cannot work—financial pressures should be anticipated. In Stage 1, the approach to status should include a written protocol. An indwelling catheter for rapid venous access may be helpful. In Stage 2, assistance finding qualified babysitters is required, and the extended family needs encouragement to help. Appropriate equipment, rescue medication and protocols should travel with the child. Siblings may benefit from a system of one parent “on call.” An internet support group provides an invaluable lifeline. In Stage 3, family isolation may be extreme—respite care and personal time for parents are important. Death from status, accidents and SUDEP (sudden unexplained death in epilepsy) occurs in 15%. Fear of SUDEP needs to be addressed. Moving from paediatric to adult care is frightening; an epilepsy transition clinic is useful. Attention to these realities may improve the quality of life for both child and family.

scholarly journals Barriers to transition from pediatric to adult care for patients with Dravet syndrome: A focus group study of caregivers

2020 ◽  
Vol 109 ◽  
pp. 107096 ◽  
Author(s):  
Danielle M. Boyce ◽  
Orrin Devinsky ◽  
Mary Anne Meskis
Keyword(s):  
Focus Group ◽  
Dravet Syndrome ◽  
Focus Group Study ◽  
Adult Care

Challenges in the Transition of Care Process for Patients with Dravet and Lennox–Gastaut Syndromes

2020 ◽  
Vol 09 (04) ◽  
pp. 135-142
Author(s):  
Cemal Karakas ◽  
Rebecca J. Schultz ◽  
Jay R. Gavvala
Keyword(s):  
Transition Planning ◽  
Medication Management ◽  
Disease Process ◽  
Parental Knowledge ◽  
Transition Process ◽  
Dravet Syndrome ◽  
Care Process ◽  
Transition Of Care ◽  
Adult Care ◽  
Transition Readiness

AbstractEpileptic encephalopathies such as Dravet syndrome (DS) and Lennox–Gastaut syndrome (LGS) present unique challenges in the transition of care not only for the providers but also for the patients and families. Some of these challenges include the complexity of disease process, differences in medication management between children and adults, high incidence of comorbidities such as psychosocial issues, a lack of structured transition process from pediatric to adult care, and the lack of parental knowledge and reluctance to transition to an adult provider. Improving transition readiness and transfer of care are essential to long-term management and continuity of care. Studies show that patients/families who possess transition readiness skills have better health outcomes. Furthermore, participation in a structured transition intervention has been shown to improve transition readiness and utilization of ambulatory care in the adult setting. Reported benefits of implementation of transition planning include increased self-esteem, improved health literacy, fewer emergency room visits, decreased hospitalizations and comorbidities, and fewer school absences. Nevertheless, there is a lack of evidenced-based, family/patient-centered transition model of care. This review's primary goal is to provide an overview of challenges in the transition of care and recommendations for an ideal transition for patients with DS and LGS.

Treatment planning instruction in North American dental schools, 1984-85

1985 ◽  
Vol 49 (10) ◽  
pp. 702-706
Author(s):  
S Kennon ◽  
TF Sleamaker ◽  
AG Farman
Keyword(s):  
Treatment Planning ◽  
North American ◽  
Dental Schools

1522: Utility of Preoperative 3-D Reconstruction of Pelvic Vasculature using Multi-Detector Spiral CT Scanning in Treatment Planning for Robotic Prostatectomy

2005 ◽  
Vol 173 (4S) ◽  
pp. 412-412
Author(s):  
Ashutosh Tewari ◽  
Assaad El-Hakim ◽  
Peter N. Schlegel ◽  
Mani Menon ◽  
Deirdre M. Coll
Keyword(s):  
Treatment Planning ◽  
Ct Scanning ◽  
Spiral Ct ◽  
Robotic Prostatectomy

Metrics: Road Map To Medical Home?

2007 ◽  
Vol 41 (12) ◽  
pp. 1-8
Author(s):  
KERRI WACHTER
Keyword(s):  
Medical Home ◽  
Road Map
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