Quality improvement in neurology: Muscular dystrophy quality measures

Neurology

Volumn 85, Issue 10, 2015, Pages 905-909

  Narayanaswami, Pushpa ^a   Dubinsky, Richard ^b   Wang, David ^e   Gjorvad, Gina ^d   David, William ^c   Finder, Jonathan ^f   Smith, Benn ^g   Cheng, Jianguo ^h   Shapiro, Frederic ⁱ   Mellion, Michelle ^j   Spurney, Christopher ^k   Wolff, Jodi ^l   England, John ^m  

^a BETH ISRAEL DEACONESS MEDICAL CENTER   (United States)

^b UNIVERSITY OF KANSAS   (United States)

^c St Francis (OSF) Health Care System   (United States)

^d AMERICAN ACADEMY OF NEUROLOGY   (United States)

^e MASSACHUSETTS GENERAL HOSPITAL   (United States)

^f Children's Institute of Pittsburgh   (United States)

^g MAYO CLINIC   (United States)

^h LERNER RESEARCH INSTITUTE   (United States)

ⁱ BOSTON CHILDREN S HOSPITAL   (United States)

^j Neurology Foundation   (United States)

^k GEORGE WASHINGTON UNIVERSITY   (United States)

^l Muscular Dystrophy Association   (United States)

^m LOUISIANA STATE UNIVERSITY SCHOOL OF MEDICINE   (United States)

more..

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; HEALTH CARE ACCESS; HEALTH CARE COST; HEALTH CARE QUALITY; HEALTH DISPARITY; HUMAN; MAJOR CLINICAL STUDY; MUSCULAR DYSTROPHY; NEUROLOGY; PHENOTYPE; PRACTICE GUIDELINE; PRIORITY JOURNAL; QUALITY OF LIFE; MUSCULAR DYSTROPHIES; STANDARDS; TOTAL QUALITY MANAGEMENT; TRENDS;

HUMANS; MUSCULAR DYSTROPHIES; NEUROLOGY; PRACTICE GUIDELINES AS TOPIC; QUALITY IMPROVEMENT;

EID: 84959041053     PISSN: 00283878     EISSN: 1526632X     Source Type: Journal    
DOI: 10.1212/WNL.0000000000001910     Document Type: Article

References (34)

1. Porter ME, Olmsted Teisberg E. How physicians can change the future of health care. JAMA 2007;297:1103-1111.
2. Lee TH. Putting the value framework to work. N Engl J Med 2010;363:2481-2483.
3. Emery AE. Population frequencies of inherited neuromus-cular diseases: a world survey. Neuromuscul Disord 1991; 1:19-29.
4. Engel AG, Yamamoto M, Fischbeck KH. Dystrophinopa-thies. In: Engel AG, Franzini-Armstrong C, eds. Myology. New York: McGraw-Hill; 1994:1133-1187.
5. Banwell BL. 223: Muscular Dystrophies. Available at: http://www.macpeds.com/documents/Neuromuscular-Muscular Dystrophies-BanwellChapter.pdf. Accessed February 15, 2014.
6. Centers for Disease Control and Prevention. Muscular dystrophy data and statistics. Available at: http://www. cdc.gov/ncbddd/musculardystrophy/data.html. Accessed February 15, 2014.
7. Norwood FL, Harling C, Chinnery PF, Eagle M, Bushby K, Straub V. Prevalence of genetic muscle disease in Northern England: in-depth analysis of a muscle clinic population. Brain 2009;132:3175-3186.
8. Padberg GW. Facioscapulohumeral Disease. Leiden: University of Leiden; 1982.
9. Flanigan KM, Coffeen CM, Sexton L, Stauffer D, Brunner S, Leppert MF. Genetic characterization of a large, historically significant Utah kindred with facioscapulohum-eral dystrophy. Neuromuscul Disord 2001;11:525-529.
10. Narayanaswami P, Weiss M, Selcen D, et al. Evidence-based guideline summary: diagnosis and treatment of limb-girdle and distal dystrophies: report of the guideline development subcommittee of the American Academy of Neurology and the practice issues review panel of the American Association of Neuromuscular and Electrodiag-nostic Medicine. Neurology 2014;83:1453-1463.
11. Tawil R, Kissel JT, Heatwole C, Pandya S, Gronseth G, Benatar M. Evidence-based guideline summary: Evalua tion, diagnosis, and management of facioscapulohumeral muscular dystrophy: report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the Practice Issues Review Panel of the American Association of Neuromuscular & Electrodiagnostic Medicine. Neurology 2015;85:357-364.
12. Kang PB, Morrison L, Iannaccone ST, et al. Evidence-based guideline summary: Evaluation, diagnosis, and management of congenital muscular dystrophy: report of the Guideline Development Subcommittee of the American Academy of Neurology and the Practice Issues Review Panel of the American Association of Neuromuscular & Electrodiagnos-tic Medicine. Neurology 2015;84:1369-1378.
13. Grootenhuis MA, de Boone JD, van der Kooi A. Living with muscular dystrophy: health-related quality of life consequences for adults and children. Health Qual Life Outcomes 2007;5:31-38.
14. Uzark K, King E, Cripe L, et al. Health-related quality of life in children and adolescents with Duchenne muscular dystrophy. Pediatrics 2012;130:e1559-e1566.
15. Kohler M, Clarenbach CF, Böni L, et al. Quality of life, physical disability, and respiratory impairment in Duchenne muscular dystrophy. Am J Respir Crit Care Med 2005;172:1032-1036.
16. Kenneson A, Kolor K, Yang Q, et al. Trends and racial disparities in muscular dystrophy deaths in the United States, 1983-1998: an analysis of multiple cause mortality data. AM J Med Genet A 2006;140:2289-2297.
17. Access Economics for the Muscular Dystrophy Association. The Cost of Muscular Dystrophy: October 2007 Report. Available at: http://www.mda.org.au/media/accesslaunch/ExecutiveSummary5.pdf. Accessed February 15, 2014.
18. Larkindale J, Yang W, Hogan PF, et al. Cost of illness for neuromuscular disease in the U.S. Muscle Nerve 2014;49: 431-438.
19. Quality and Safety Subcommittee. American Academy of Neurology Quality Measurement Manual: 2014 Update. 2015. Available at: https://www.aan.com/uploadedFiles/Website-Library-Assets/Documents/3.Practice-Management/2.Quality-Improvement/1.Quality-Measures/2.About- Quality-Measures/2015%2002%2011%20Process%20 Manual%20Final.pdf. Accessed February 27, 2014.
20. Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press; 2001.
21. Moxley RT, Ashwal S, Pandya S, et al. Practice parameter: corticosteroid treatment of Duchenne dystrophy: report of the quality standards subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology Society. Neurology 2005;64:13-20.
22. Matthews DK, Adams KA, Miller LA. Use of corticoste-roids in a population-based cohort of boys with Duchenne and Becker muscular dystrophy. J Child Neurol 2010;25: 1319-1324.
23. Griggs RC, Here BE, Reha A, et al. Corticosteroids in Duchenne muscular dystrophy: major variations in practice. Muscle Nerve 2013;48:27-31.
24. Bushby K, Finkel R, Birnkrant DJ, et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial management. Lancet Neurol 2010;9:77-93.
25. Bushby K, Finkel R, Birnkrant DJ, et al. Diagnosis and management of Duchene muscular dystrophy, part 2: implementation of multidisciplinary care. Lancet Neurol 2010;9:177-189.
26. Miller RG, Jackson CE, Kasarskis EJ, et al. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: drug, nutritional, and respiratory therapies (an evidence-based review): report of the quality Standards Subcommittee of the American Academy of Neurology. Neurology 2009;73:1218-1226.
27. Bourke JP, Muntoni F, Bushby K. 107th ENMC international workshop: the management of cardiac involvement in muscular dystrophy and myotonic dystrophy: 7th-9th June 2002, Naarden, the Netherlands. Neuro-muscul Disord 2003;13:166-172.
28. Wang CH, Bonnemann CG, Rutkowski A, et al. Consensus Statement of standards of care for congenital muscular dystrophies. J Child Neurol 2010;25:1559-1581.
29. Jensen MP. Pain assessment in clinical trials. In: Wittink H, Carr D, eds. Pain Management: Evidence, Outcomes, and Quality of Life in Pain Treatment. 1st ed. Amsterdam: Elsevier; 2008:57-88.
30. Hull J, Aniapravan R, Chan E, et al. British Thoracic Society guideline for respiratory management of children with neuromuscular weakness. Thorax 2012;67:i1-i40.
31. Miro J, Gertz KJ, Carter GT, Jensen MP. Chronic pain in neuromuscular disease: pain site and intensity differentially impacts function. Phys Med Rehabil Clin N Am 2012;23: 895-902.
32. Alschuler KN, Jensen MP, Goetz MC, et al. Effects of pain and fatigue on physical functioning and depression in persons with muscular dystrophy. Disabil Health J 2012;5:277-283.
33. McKim D, Road J, Avendano M, et al. Home mechanical ventilation: a Canadian Thoracic Society clinical practice guideline. Can Resp J 2011;18:197-215.
34. Carter GT, Joyce NC, Abresch AL, et al. Using palliative care in progressive neuromuscular disease to maximize quality of life. Phys Med Rehabil Clin N Am 2012;23: 903-909.