Adult care for Duchenne muscular dystrophy in the UK

Journal of Neurology

Volumn 262, Issue 3, 2015, Pages 629-641

  Rodger, Sunil ^a   Woods, Katherine L ^a   Bladen, Catherine L ^a   Stringer, Angela ^b   Vry, Julia ^c   Gramsch, Kathrin ^c   Kirschner, Janbernd ^c   Thompson, Rachel ^a   Bushby, Katharine ^a   Lochmüller, Hanns ^a  

^a NEWCASTLE UNIVERSITY   (United Kingdom)

^b UNIVERSITY COLLEGE LONDON   (United Kingdom)

^c UNIVERSITY OF FREIBURG   (Germany)

Author keywords

Adult; Care; CARE NMD; DMD; Duchenne muscular dystrophy; Neuromuscular

Indexed keywords

ADULT; AGE DISTRIBUTION; ARTICLE; DENMARK; DUCHENNE MUSCULAR DYSTROPHY; EASTERN EUROPE; EDUCATIONAL STATUS; GERMANY; HEALTH CARE ACCESS; HEALTH CARE SYSTEM; HEART DISEASE; HOSPITAL ADMISSION; HUMAN; MAJOR CLINICAL STUDY; PATIENT CARE; PATIENT SATISFACTION; PHYSIOTHERAPY; PRIORITY JOURNAL; RESPIRATORY CARE; RESPIRATORY FAILURE; UNITED KINGDOM; WESTERN EUROPE; CARDIOVASCULAR DISEASES; CLINICAL TRIAL; COHORT ANALYSIS; CROSS-SECTIONAL STUDY; CULTURAL FACTOR; EUROPE; FEMALE; HEALTH CARE DELIVERY; HEALTH SURVEY; HOSPITALIZATION; MALE; MULTICENTER STUDY; MUSCULAR DYSTROPHY, DUCHENNE; PATHOPHYSIOLOGY; PROCEDURES; PSYCHOLOGY; QUESTIONNAIRE; STATISTICS AND NUMERICAL DATA; YOUNG ADULT;

ADULT; CARDIOVASCULAR DISEASES; COHORT STUDIES; CROSS-CULTURAL COMPARISON; CROSS-SECTIONAL STUDIES; DELIVERY OF HEALTH CARE; EUROPE; FEMALE; HEALTH SURVEYS; HOSPITALIZATION; HUMANS; MALE; MUSCULAR DYSTROPHY, DUCHENNE; PATIENT SATISFACTION; SURVEYS AND QUESTIONNAIRES; UNITED KINGDOM; YOUNG ADULT;

EID: 84925489162     PISSN: 03405354     EISSN: 14321459     Source Type: Journal    
DOI: 10.1007/s00415-014-7585-3     Document Type: Article

References (31)

1. Emery AE (1991) Population frequencies of inherited neuromuscular diseases—a world survey. Neuromuscul Disord 1(1):19–29
2. Mendell JR, Shilling C, Leslie ND, Flanigan KM, al-Dahhak R, Gastier-Foster J, Kneile K, Dunn DM, Duval B, Aoyagi A, Hamil C, Mahmoud M, Roush K, Bird L, Rankin C, Lilly H, Street N, Chandrasekar R, Weiss RB (2012) Evidence-based path to newborn screening for Duchenne muscular dystrophy. Ann Neurol 71(3):304–313. doi:10.1002/ana.23528
3. Bushby K, Finkel R, Birnkrant DJ, Case LE, Clemens PR, Cripe L, Kaul A, Kinnett K, McDonald C, Pandya S, Poysky J, Shapiro F, Tomezsko J, Constantin C (2010) Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial management. Lancet Neurol 9(1):77–93. doi:10.1016/s1474-4422(09)70271-6
4. Bushby K, Finkel R, Birnkrant DJ, Case LE, Clemens PR, Cripe L, Kaul A, Kinnett K, McDonald C, Pandya S, Poysky J, Shapiro F, Tomezsko J, Constantin C (2010) Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care. Lancet Neurol 9(2):177–189. doi:10.1016/s1474-4422(09)70272-8
5. National Institute for Health and Care Excellence (2011) Final accreditation report: ‘diagnosis and management of Duchenne muscular dystrophy’ guideline. http://www.nice.org.uk/Media/Default/About/accreditation/accreditation-decisions/Duchenne-Muscular-Dystrophy-Care-Considerations-Working-Group-final-decision.pdf. Accessed 22 Sept 2014
6. Eagle M, Baudouin SV, Chandler C, Giddings DR, Bullock R, Bushby K (2002) Survival in Duchenne muscular dystrophy: improvements in life expectancy since 1967 and the impact of home nocturnal ventilation. Neuromuscul Disord 12(10):926–929. doi:10.1016/S0960-8966(02)00140-2
7. Eagle M, Bourke J, Bullock R, Gibson M, Mehta J, Giddings D, Straub V, Bushby K (2007) Managing Duchenne muscular dystrophy—the additive effect of spinal surgery and home nocturnal ventilation in improving survival. Neuromuscul Disord 17(6):470–475. doi:10.1016/j.nmd.2007.03.002
8. Wagner KR, Lechtzin N, Judge DP (2007) Current treatment of adult Duchenne muscular dystrophy. Biochim Biophys Acta 1772(2):229–237. doi:10.1016/j.bbadis.2006.06.009
9. Beresford B, Stuttard L (2014) Young adults as users of adult healthcare: experiences of young adults with complex or life-limiting conditions. Clin Med 14(4):404–408. doi:10.7861/clinmedicine.14-4-404
10. Kirk S (2008) Transitions in the lives of young people with complex healthcare needs. Child Care Health Dev 34(5):567–575. doi:10.1111/j.1365-2214.2008.00862.x
11. Rahbek J, Werge B, Madsen A, Marquardt J, Steffensen BF, Jeppesen J (2005) Adult life with Duchenne muscular dystrophy: observations among an emerging and unforeseen patient population. Pediatr Rehabil 8(1):17–28
12. Schrans DGM, Abbott D, Peay HL, Pangalila RF, Vroom E, Goemans N, Vles JSH, Aldenkamp AP, Hendriksen JGM (2013) 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). Neuromuscul Disord 23(3):283–286. doi:10.1016/j.nmd.2012.08.009
13. All Party Parliamentary Group for Muscular Dystrophy (2009) Access to specialist neuromuscular care: The Walton report. http://www.muscular-dystrophy.org/assets/0000/9943/Walton_report.pdf. Accessed 22 Sept 2014
14. CARE-NMD project CARE-NMD website. http://www.care-nmd.eu/. Accessed 22 Sept 2014
15. Bladen CL, Rafferty K, Straub V, Monges S, Moresco A, Dawkins H, Roy A, Chamova T, Guergueltcheva V, Korngut L, Campbell C, Dai Y, Barisic N, Kos T, Brabec P, Rahbek J, Lahdetie J, Tuffery-Giraud S, Claustres M, Leturcq F, Ben Yaou R, Walter MC, Schreiber O, Karcagi V, Herczegfalvi A, Viswanathan V, de la Caridad Guerrero Sarmiento I, Ambrosini A, Ceradini F, Kimura E, van den Bergen JC, Rodrigues M, Roxburgh R, Lusakowska A, Oliveira J, Santos R, Neagu E, Butoianu N, Artemieva S, Rasic VM, Posada M, Palau F, Lindvall B, Bloetzer C, Karaduman A, Topaloglu H, Inal S, Oflazer P, Stringer A, Shatillo AV, Martin AS, Peay H, Flanigan KM, Salgado D, von Rekowski B, Lynn S, Heslop E, Gainotti S, Taruscio D, Kirschner J, Verschuuren J, Bushby K, Beroud C, Lochmuller H (2013) The TREAT-NMD Duchenne muscular dystrophy registries: conception, design, and utilization by industry and academia. Hum Mutat 34(11):1449–1457. doi:10.1002/humu.22390
16. Abbott D (2012) Other voices, other rooms: reflections on talking to young men with Duchenne muscular dystrophy and their families about transition to adulthood. Child Soc 26(3):241–250. doi:10.1111/j.1099-0860.2012.00437.x
17. Muscular Dystrophy Campaign (2008) Building on the foundations: focus on physio. http://www.muscular-dystrophy.org/assets/0000/6276/Access_to_physio_report.pdf. Accessed 22 Sept 2014
18. Hill ME, Phillips MF (2006) Service provision for adults with long-term disability: a review of services for adults with chronic neuromuscular conditions in the United Kingdom. Neuromuscul Disord 16(2):107–112
19. Abbott D, Carpenter J (2014) ‘Wasting precious time’: young men with Duchenne muscular dystrophy negotiate the transition to adulthood. Disabil Soc 29(8):1192–1205. doi:10.1080/09687599.2014.916607
20. Abbott D, Carpenter J, Bushby K (2012) Transition to adulthood for young men with Duchenne muscular dystrophy: research from the UK. Neuromuscul Disord 22(5):445–446. doi:10.1016/j.nmd.2012.02.004
21. Crowley R, Wolfe I, Lock K, McKee M (2011) Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child. doi:10.1136/adc.2010.202473
22. Pellegrini N, Guillon B, Prigent H, Pellegrini M, Orlikovski D, Raphael J-C, Lofaso F (2004) Optimization of power wheelchair control for patients with severe Duchenne muscular dystrophy. Neuromuscul Disord 14(5):297–300. doi:10.1016/j.nmd.2004.02.005
23. Purdy S (2010) Avoiding hospital admissions. What does the research evidence say. The King’s Fund, London
24. Purdy S, Paranjothy S, Huntley A, Thomas R, Mann M, Huws D, Brindle P, Elwyn G (2012) Interventions to reduce unplanned hospital admission: a series of systematic reviews. National Institute for Health Research, Bristol
25. Muscular Dystrophy Campaign (2011) Invest to save: improving services and reducing costs. http://www.muscular-dystrophy.org/assets/0002/4945/Muscular_Dystrophy_Campaign_Invest_to_Save_Report.pdf. Accessed 22 Sept 2014
26. Jaffer F, Reilly MM, Quinlivan R, Muntoni F, Turner C, Parton M, Lunn M, Hilton-Jones D, Korkodilos M, Hanna MG (2013) Emergency neuromuscular admissions are avoidable: a regional audit of unplanned hospital admissions of neuromuscular patients 2009–2011: final results and recommendations. J Neurol Neurosurg Psychiatry 84(11):e2. doi:10.1136/jnnp-2013-306573.7
27. Korkodilos M, Hajioff S, Gardner C, Overett S, Ibrahim S, Jaffer F, Hanna MG (2012) Audit of unplanned admissions in neuromuscular patients: a collaborative audit. NHS Audit, Information and Analysis Unit, London
28. Lannon CM, Peterson LE (2013) Pediatric collaborative networks for quality improvement and research. Acad Pediatr 13(6, Supplement):S69–S74. doi:10.1016/j.acap.2013.07.004
29. Mogayzel PJ, Dunitz J, Marrow LC, Hazle LA (2014) Improving chronic care delivery and outcomes: the impact of the cystic fibrosis care center network. BMJ Qual Saf 23(Suppl 1):i3–i8. doi:10.1136/bmjqs-2013-002363
30. Evangelista T, van Engelen B, Bushby K (2014) 200th ENMC international workshop “European reference networks: recommendations and criteria in the neuromuscular field”, 18–20 October 2013, Naarden, The Netherlands. Neuromuscul Disord 24(6):537–545
31. NHS England (2013) D04/S/a 2013/14 NHS standard contract for neurosciences: specialised neurology (adult). Schedule 2A—service specifications