Transition in Duchenne Muscular Dystrophy: An expert meeting report and description of transition needs in an emergent patient population: (Parent Project Muscular Dystrophy Transition Expert Meeting 17–18 June 2011, Amsterdam, The Netherlands)

Neuromuscular Disorders

Volumn 23, Issue 3, 2013, Pages 283-286

  Schrans, D G M ^a   Abbott, D ^b   Peay, H L ^c   Pangalila, R F ^d   Vroom, E ^e   Goemans, N ^f   Vles, J S H ^a,g   Aldenkamp, A P ^a,g   Hendriksen, J G M ^a,g  

^a EPILEPSY CENTER KEMPENHAEGHE   (Netherlands)

^b UNIVERSITY OF BRISTOL   (United Kingdom)

^c Parent Project Muscular Dystrophy   (United States)

^d ERASMUS MEDICAL CENTER   (Netherlands)

^e Duchenne Parent Project   (Netherlands)

^f UNIVERSITY HOSPITALS LEUVEN   (Belgium)

^g MAASTRICHT UNIVERSITY MEDICAL CENTER   (Netherlands)

Author keywords

Adolescence; Adulthood; DMD; Duchenne muscular dystrophy; Educational tools; Transition

Indexed keywords

CHILD HEALTH CARE; CONFERENCE PAPER; COPING BEHAVIOR; DAILY LIFE ACTIVITY; DUCHENNE MUSCULAR DYSTROPHY; EMERGENCY CARE; EVIDENCE BASED MEDICINE; HEALTH CARE ACCESS; HEALTH CARE NEED; HUMAN; MEDICAL DOCUMENTATION; PATIENT INFORMATION; PATIENT PARTICIPATION; PATIENT SATISFACTION; PRIORITY JOURNAL; QUALITY OF LIFE; SOCIAL SUPPORT; TRANSITIONAL CARE; VULNERABLE POPULATION; ADOLESCENT; ADULT; HEALTH SERVICE; NETHERLANDS; TRANSITION TO ADULT CARE;

ADOLESCENT; ADULT; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; MUSCULAR DYSTROPHY, DUCHENNE; NETHERLANDS; TRANSITION TO ADULT CARE;

EID: 85027943088     PISSN: 09608966     EISSN: 18732364     Source Type: Journal    
DOI: 10.1016/j.nmd.2012.08.009     Document Type: Conference Paper

References (7)

1. Eagle, M., Baudouin, S.V., Chandler, C., Giddings, D.R., Bullock, R., Bushby, K., Survival in Duchenne muscular dystrophy: improvements in life expectancy since 1967 and the impact of home nocturnal ventilation. Neuromuscul Disord 12:10 (2002), 926–929.
2. Hendriksen JGM, Schrans DGM, Jonge de J. Video documentary “DMD with a Future – The power to live”; 2011. Requests for a copy of the documentary can be sent to the correspondence address within this report.
3. Wedgwood N, Llewellyn G, Honey A, Schneider J. The transition of adolescents with chronic health conditions from paediatric to adult services. Australian Research Alliance for Children and Youth, ; 2008 [accessed 5th March 2012].
4. Camfield, P., Camfield, C., Transition to adult care for children with chronic neurological disorders. Ann Neurol 69 (2011), 437–444.
5. Abbott, D., Carpenter, J., Transition to adulthood for young men with DMD muscular dystrophy. Int J Integr Care 9 (2009), 1568–4156.
6. Gibson, B.E., Young, N.L., Upshur, R.E., McKeever, P., Men on the margin: a Bourdieusian examination of living into adulthood with muscular dystrophy. Soc Sci Med 65:3 (2007), 505–517 80(7):706–14.
7. Rahbek, J., Werge, B., Madsen, A., Marquardt, J., Fynbo Steffensen, B., Marquardt, J., Adult life with DMD muscular dystrophy: observations among an emerging and unforeseen individual population. J Pediatr Rehabil 8:1 (2005), 17–28.