Transition and transfer from pediatric to adult health care in epilepsy: A families' survey on Dravet syndrome

被引：40
作者：
Kuchenbuch, Mathieu [1 ,2 ,3 ]
Chemaly, Nicole [3 ,4 ,5 ,6 ]
Chiron, Catherine [3 ,4 ,5 ,6 ]
Dulac, Olivier [3 ,4 ,5 ,6 ]
Nabbout, Rima [3 ,4 ,5 ,6 ]
机构：
[1] Univ Hosp Rennes, Dept Pediat, F-35000 Rennes, France
[2] Univ Hosp Rennes, Dept Neurophysiol, F-35000 Rennes, France
[3] Hop Necker Enfants Malad, APHP, Ctr Reference Epilepsies Rares, Dept Pediat Neurol, F-75015 Paris, France
[4] INSERM, U663, Paris, France
[5] Univ Paris 05, Paris, France
[6] CEA, Gif Sur Yvette, France
来源：
EPILEPSY & BEHAVIOR | 2013年 / 29卷 / 01期
关键词：
Dravet syndrome; Epilepsy; Childhood; Mental retardation; Pediatric care; Adult care; Transition; Transfer; Child neurologist; Neurologist; PREVALENCE; SERVICES; YOUTH;
D O I：
10.1016/j.yebeh.2013.07.015
中图分类号：
B84 [心理学]; C [社会科学总论]; Q98 [人类学];
学科分类号：
03 ; 0303 ; 030303 ; 04 ; 0402 ;
摘要：
We used a questionnaire to ascertain the perception of transition and transfer from pediatric to adult health-care system in patients with Dravet syndrome and their families. Sixty families received the questionnaire. We had a response rate of 85%. Sixty-one percent of patients experienced a transfer. Factors that positively impacted transfer were the quality of transition preparation (p < .000001), a longer duration of follow-up by the same child neurologist (p < .001), the availability of the child neurology staff (p < .01), a transfer into the adult health-care system after the age of 18 (p < .01), and a stable medical condition before transfer (p < .05). All families reported a positive experience in the pediatric health-care system. Child neurologists were considered as welcoming, available, and helpful. Their experience in the adult health-care system was similar to pediatric care. Almost all patients who experienced "transfer" reported no gap in this process. (C) 2013 Elsevier Inc. All rights reserved.
引用
收藏
页码：161 / 165
页数：5
相关论文
共 21 条
[1]   Clinical Report-Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home [J].
Cooley W.C. ;
Sagerman P.J. ;
Barr M.S. ;
Ciccarelli M. ;
Hergenroeder A.C. ;
Klitzner T.S. ;
Mann M. ;
Pickler L. ;
Strickland B. ;
Thompson B. ;
Weinberg S.T. ;
White P.H. ;
Wilkie N.C. ;
Skipper S.M. ;
Brin A. ;
Flinn S.K. .
PEDIATRICS, 2011, 128 (01) :182-+
[2]  
[Anonymous], [No title captured]
[3]  
[Anonymous], 2010, Cystic fibrosis foundation patient registry 2020 annual data report
[4]  
Boyle MP, 2001, PEDIAT PULMONOL, V32, P344
[5]   Strategies for transitioning to adult care for youth with Lennox-Gastaut syndrome and related disorders [J].
Camfield, Peter R. ;
Gibson, Patricia A. ;
Douglass, Laurie M. .
EPILEPSIA, 2011, 52 :21-27
[6]  
Cronbach LJ, 1951, PSYCHOMETRIKA, V16, P297
[7]   Transition of patients with inflammatory bowel disease from pediatric to adult care [J].
Dabadie, A. ;
Troadec, F. ;
Heresbach, D. ;
Siproudhis, L. ;
Pagenault, M. ;
Bretagne, J. -F. .
GASTROENTEROLOGIE CLINIQUE ET BIOLOGIQUE, 2008, 32 (05) :451-459
[8]   International comparison of median age at death from cystic fibrosis [J].
Fogarty, A ;
Hubbard, R ;
Britton, J .
CHEST, 2000, 117 (06) :1656-1660
[9]   Understanding the role of health care providers during the transition of adolescents with, disabilities and special health care needs [J].
Geenen, SJ ;
Powers, LE ;
Sells, W .
JOURNAL OF ADOLESCENT HEALTH, 2003, 32 (03) :225-233
[10]  
GORTMAKER SL, 1984, PEDIATR CLIN N AM, V31, P3
123