A mapping review of international guidance on the management and care of amyotrophic lateral sclerosis (ALS)

References

• Clinical features of amyotrophic lateral sclerosis and other forms of motor neuron disease [Internet]. [cited 2015 Apr 9]. Available from: http://www.uptodate.com/contents/clinical-features-of-amyotrophic-lateralsclerosis-and-other-forms-of-motor-neuron-disease.
   Google Scholar
• Kiernan MC, Vucic S, Cheah BC, Turner MR, Eisen A, Hardiman O, et al. Amyotrophic Lateral Scler. Lancet. 2011;377:942–55.
   PubMed Web of Science ®Google Scholar
• Goldstein LH, Abrahams S. Changes in cognition and behaviour in amyotrophic lateral sclerosis: nature of impairment and implications for assessment. Lancet Neurol. 2013;12:368–80.
   PubMed Web of Science ®Google Scholar
• Pagnini F. Psychological well-being and quality of life in amyotrophic lateral sclerosis: a review. Int J Psychol. 2013;48:194–205.
   PubMed Web of Science ®Google Scholar
• Tramonti F, Bongioanni P, Di Bernardo C, Davitti S, Rossi B. Quality of life of patients with amyotrophic lateral sclerosis. Psychol Health Med. 2012;17:621–8.
   PubMed Web of Science ®Google Scholar
• Jenkinson C, Fitzpatrick R, Swash M, Peto V, Group A-HS. The ALS Health Profile Study: quality of life of amyotrophic lateral sclerosis patients and carers in Europe. J Neurol. 2000;247:835–40.
   PubMed Web of Science ®Google Scholar
• Pagnini F, Rossi G, Lunetta C, Banfi P, Castelnuovo G, Corbo M, et al. Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis. Psychol Health Med. 2010;15:685–93.
   PubMed Web of Science ®Google Scholar
• Weisser FB, Bristowe K, Jackson D. Experiences of burden, needs, rewards and resilience in family caregivers of people living with motor neurone disease/amyotrophic lateral sclerosis: a secondary thematic analysis of qualitative interviews. Palliat Med. 2015;29:737–45.
   PubMed Web of Science ®Google Scholar
• Gladman M, Zinman L. The economic impact of amyotrophic lateral sclerosis: a systematic review. Expert Rev Pharmacoecon Outcomes Res. 2015;15:439–50.
   PubMed Web of Science ®Google Scholar
• Miller RG, Mitchell JD, Moore DH. Riluzole for amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND). Cochrane Database of Systematic Reviews [Internet]. 2012; (3). Available from: http://onlinelibrary.wiley.com/store/10.1002/14651858.CD001447.pub3/asset/CD001447.pdf?v=1&t=i1lqwsf3&s=8c0e387df5c5ea1948d9a59c4da9d1c1ab0a0f4c
   Google Scholar
• Leigh PN, Abrahams S, Al-Chalabi A, Ampong MA, Goldstein LH, Johnson J, et al. The management of motor neuron disease. J Neurol Neurosurg Psychiatry. 2003;74 (Suppl 4):32–47.
   Google Scholar
• Hardiman O, van den Berg LH, Kiernan MC. Clinical diagnosis and management of amyotrophic lateral sclerosis. Nat Rev Neurol. 2011;7:639–49.
   PubMed Web of Science ®Google Scholar
• Miller RG, Anderson F, Brooks BR, Mitsumoto H, Bradley WG, Ringel SP. Outcomes research in amyotrophic lateral sclerosis: lessons learned from the amyotrophic lateral sclerosis clinical assessment, research, and education database. Ann Neurol. 2009;65:S8–24.
   Web of Science ®Google Scholar
• Bradley WG, Anderson F, Gowda N, Miller RG, Group ACS. Changes in the management of ALS since the publication of the AAN ALS practice parameter 1999. Amyotroph Lateral Scler Other Motor Neuron Disord. 2004;5:240–4.
   PubMed Web of Science ®Google Scholar
• Chiò A, Silani V. Amyotrophic lateral sclerosis care in Italy: a nationwide study in neurological centres. Journal of the Neurological Sciences. 2001;191:145–50.
   PubMed Web of Science ®Google Scholar
• Borasio GD, Shaw PJ, Hardiman O, Ludolph AC, Sales Luis ML, et al. Standards of palliative care for patients with amyotrophic lateral sclerosis: results of a European survey. Amyotroph Lateral Scler Other Motor Neuron Disord. 2001;2:159–64.
   PubMed Web of Science ®Google Scholar
• Wennberg JE. Unwarranted variations in healthcare delivery: implications for academic medical centres. Br Med J. 2002;325:961–4.
   PubMed Web of Science ®Google Scholar
• Borasio GD, Miller RG. Clinical characteristics and management of ALS. Semin Neurol. 2001;21:155–66.
   PubMed Web of Science ®Google Scholar
• Miller RG, Rosenberg JA, Gelinas D, Mitsumoto H, Newman D, Sufit R, et al. Practice parameter: The care of the patient with amyotrophic lateral sclerosis (an evidence based review). Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 1999;52:1311.
   PubMed Web of Science ®Google Scholar
• Andersen PM, Borasio GD, Dengler R, Hardiman O, Kollewe K, Leigh PN, et al. EFNS task force on management of amyotrophic lateral sclerosis: guidelines for diagnosing and clinical care of patients and relatives. Eur J Neurol. 2005;12:921–38.
   PubMed Web of Science ®Google Scholar
• Miller RG, Jackson CE, Kasarskis EJ, England JD, Forshew D, Johnston W, et al. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioural impairment (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2009;73:1227–33.
   PubMed Web of Science ®Google Scholar
• Miller RG, Jackson CE, Kasarskis EJ, England JD, Forshew D, Johnston W, 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;73:1218–26.
   PubMed Web of Science ®Google Scholar
• Andersen PM, Abrahams S, Borasio GD, de Carvalho M, Chio A, van Damme P, et al. EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS): revised report of an EFNS task force. Eur J Neurol. 2012;19:360–75.
   PubMed Web of Science ®Google Scholar
• Grol R, van Weel C. Getting a grip on guidelines: how to make them more relevant for practice. Br J Gen Pract. 2009;59:e143–4.
   PubMed Web of Science ®Google Scholar
• Grimshaw J, Freemantle N, Wallace S, Russell I, Hurwitz B, Watt I, et al. Developing and implementing clinical practice guidelines. Qual Health Care. 1995;4:55–64.
   PubMedGoogle Scholar
• Miller RG, Brooks BR, Swain-Eng RJ, Basner RC, Carter GT, Casey P, et al. Quality improvement in neurology: amyotrophic lateral sclerosis quality measures: report of the quality measurement and reporting subcommittee of the American Academy of Neurology. Neurology. 2013;81:2136–40.
   PubMed Web of Science ®Google Scholar
• Mainz J. Defining and classifying clinical indicators for quality improvement. Int J Qual Health Care. 2003;15:523–30.
   PubMed Web of Science ®Google Scholar
• McGlynn EA. Choosing and evaluating clinical performance measures. The Joint Commission journal on quality improvement. 1998;24:470–9.
   PubMedGoogle Scholar
• Kötter T, Blozik E, Scherer M. Methods for the guideline-based development of quality indicator: a systematic review. Implement Sci. 2012;7:21.
   PubMed Web of Science ®Google Scholar
• Pearson SD, Goulart-Fisher D, Lee TH. Critical pathways as a strategy for improving care: problems and potential. Ann Intern Med. 1995;123:941–8.
   PubMed Web of Science ®Google Scholar
• Vanhaecht K, van Gerven E, Deneckere S, Lodewijckx C, Janssen I, van Zelm R, et al. The seven-phase method to design, implement and evaluate care pathways. Int J Pers Cent Med. 2012;2:341–51.
   Google Scholar
• Lodewijckx C, Decramer M, Sermeus W, Panella M, Deneckere S, Vanhaecht K. Eight-step method to build the clinical content of an evidence-based care pathway: the case for COPD exacerbation. Trials. 2012;13:229.
   PubMed Web of Science ®Google Scholar
• EPPI-Centre. EPPI-Centre methods for conducting systematic reviews. London: EPPI-Centre, Social Science Research Unit, Institute of Education, University of London; 2006. Available from: http://eppi.ioe.ac.uk/
   Google Scholar
• Grant MJ, Booth A. A typology of reviews: an analysis of 14 review types and associated methodologies. Health Info Libr J. 2009;26:91–108.
   PubMed Web of Science ®Google Scholar
• The AGREE Next Step Consortium. Appraisal of guidelines for research and evaluation II. AGREE II Instrument The Agree Research Trust. 2009.
   Google Scholar
• de Koning J, Smulders A, Klazinga N. Appraisal of indicators through research and evaluation (AIRE). 2007.
   Google Scholar
• Health on the Net Foundation. The HON Code of Conduct for medical and health Web sites (HONcode) [updated 2013 Sept 19; cited 2015 Apr 17]. Available from: https://www.healthonnet.org/HONcode/Conduct.html.
   Google Scholar
• National Guideline Clearinghouse. 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.]. Rockville (MD): Agency for Healthcare Research and Quality (AHRQ); [cited 2014 Nov 26]. Available from:http://www.guideline.gov.
   Google Scholar
• National Guideline Clearinghouse. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review). Report of the Quality Standards Subcommittee of the American Academy of Neurology. Rockville (MD): Agency for Healthcare Research and Quality (AHRQ); [cited 2015 April 17]. Available from: http://www.guideline.gov.
   Google Scholar
• National Guideline Clearinghouse. EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS) - revised report of an EFNS task force. Rockville (MD): Agency for Healthcare Research and Quality (AHRQ); [cited 2015 April 17]. Available from: http://www.guideline.gov.
   Google Scholar
• National Guideline Clearinghouse. Motor neurone disease. The use of non-invasive ventilation in the management of motor neuron disease. Rockville (MD): Agency for Healthcare Research and Quality (AHRQ); [cited 2014 Nov 26]. Available from: http://www.guideline.gov.
   Google Scholar
• Centre for Clinical Practice at NICE (UK). Motor Neurone Disease: The Use of Non-Invasive Ventilation in the Management of Motor Neurone Disease [Internet]. London: National Institute for Health and Clinical Excellence (UK); 2010 Jul. (NICE Clinical Guidelines, No. 105.) Available from: http://www.ncbi.nlm.nih.gov/books/NBK65383/
   Google Scholar
• van den Berg LH, van den Berg JP, de Goeijen JC, Kruitwagen ET. Amyotrophic lateral sclerosis (ALS). National consensus-based guideline. Version: 2.0 [Internet]. 2009 [cited 2015 Apr 29]. Available from: http://www.oncoline.nl/als.
   Google Scholar
• EBM Practice Net. Amyotrophic lateral sclerosis (ALS) [Internet]. 2009 [cited 2015 Apr 29]. Available from: https://www.ebmpracticenet.be/nl/Paginas/default.aspx?ebmid=ebm00799.
   Google Scholar
• Elman LB, McCluskey L. Diagnosis of amyotrophic lateral sclerosis and other forms of motor neuron disease [Internet]. 2014 [updated 2014 Jan 29; cited 2015 Apr 29]. Available from: http://www.uptodate.com/contents/diagnosis-of-amyotrophic-lateral-sclerosis-and-other-forms-of-motor-neuron-disease.
   Google Scholar
• Galvez-Jimenez N. Symptom-based management of amyotrophic lateral sclerosis [Internet]. 2014 [cited 2015 Apr 29]. Available from: http://www.uptodate.com/contents/symptom-based-management-of-amyotrophic-lateral-sclerosis?source=related_link.
   Google Scholar
• Choudry RB, Galvez-Jimenez N, Cudkowicz ME. Disease modifying treatment of amyotrophic lateral sclerosis [Internet]. 2014 [cited 2015 Apr 29]. Available from: http://www.uptodate.com/contents/clinical-features-of-amyotrophic-lateral-sclerosis-and-other-forms-of-motor-neuron-disease.
   Google Scholar
• Institute Of Medicine (IOM). Crossing the Quality Chasm: A New Health System for the 21st Century: The National Academies Press; 2001.
   Google Scholar
• McGlynn EA, Asch SM, Adams J, Keesey J, Hicks J, DeCristofaro A, et al. The Quality of Health Care Delivered to Adults in the United States. N Engl J Med. 2003;348:2635–45.
   PubMed Web of Science ®Google Scholar
• Panella M, Marchisio S, Di Stanislao F. Reducing clinical variations with clinical pathways: do pathways work? Int J Qual Health Care. 2003;15:509–21.
   PubMed Web of Science ®Google Scholar
• Cicerone KD. Evidence-Based Practice and the Limits of Rational Rehabilitation. Arch Phys Med and Rehabil. 2005;86:1073–4.
   PubMed Web of Science ®Google Scholar
• Leape LL, Weissman JS, Schneider EC, Piana RN, Gatsonis C, Epstein AM. Adherence to practice guidelines: the role of specialty society guidelines. Am Heart J. 2003;145:19–26.
   PubMed Web of Science ®Google Scholar
• Grol R, Dalhuijsen J, Thomas S, Rutten G, Mokkink H. Attributes of clinical guidelines that influence use of guidelines in general practice: observational study. Br Med J. 1998;317:858–61.
   PubMed Web of Science ®Google Scholar
• Bourke SC, Tomlinson M, Williams TL, Bullock RE, Shaw PJ, Gibson GJ. Effects of non-invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: a randomized controlled trial. Lancet Neurol. 2006;5:140–7.
   PubMed Web of Science ®Google Scholar
• Radunovic A, Annane D, Rafiq Muhammad K, Mustfa N. Mechanical ventilation for amyotrophic lateral sclerosis/motor neuron disease. Cochrane Database of Systematic Reviews [Internet]. 2013; (3). Available from: http://onlinelibrary.wiley.com/store/10.1002/14651858.CD004427.pub3/asset/CD004427.pdf?v=1&t=i1lqvbho&s=701e30eefcf7063b40eb05466741a534208fc560.
   Google Scholar
• Jackson CE, Rosenfeld J, Moore DH, Bryan WW, Barohn RJ, Wrench M, et al. A preliminary evaluation of a prospective study of pulmonary function studies and symptoms of hypoventilation in ALS/MND patients. J Neurol Sci. 2001;191:75–8.
   PubMed Web of Science ®Google Scholar
• Lechtzin N, Scott Y, Busse AM, Clawson LL, Kimball R, Wiener CM. Early use of non-invasive ventilation prolongs survival in subjects with ALS. Amyotroph Lateral Scler. 2007;8:185–8.
   PubMed Web of Science ®Google Scholar
• Heffernan C, Jenkinson C, Holmes T, Feder G, Kupfer R, Leigh PN, et al. Nutritional management in MND/ALS patients: an evidence based review. Amyotroph Lateral Scler. 2004;5:72–83.
   PubMed Web of Science ®Google Scholar
• Katzberg HD, Benatar M. Enteral tube feeding for amyotrophic lateral sclerosis/motor neuron disease. Cochrane Database of Systematic Reviews [Internet]. 2011; (1). Available from: http://onlinelibrary.wiley.com/store/10.1002/14651858.CD004030.pub3/asset/CD004030.pdf?v=1&t=i1lqwx0l&s=9e4963219bb7f8d8e71cee197b0560322e06aac5.
   Google Scholar
• Gil J, Funalot B, Verschueren A, Danel-Brunaud V, Camu W, Vandenberghe N, et al. Causes of death among French patients with amyotrophic lateral sclerosis: a prospective study. Eur J Neurol. 2008;15:1245–51.
   PubMed Web of Science ®Google Scholar
• Corcia P, Pradat PF, Salachas F, Bruneteau G, Forestier N, Seilhean D, et al. Causes of death in a post mortem series of ALS patients. Amyotroph Lateral Scler. 2008;9:59–62.
   PubMed Web of Science ®Google Scholar
• Marin B, Desport JC, Kajeu P, Jesus P, Nicolaud B, Nicol M, et al. Alteration of nutritional status at diagnosis is a prognostic factor for survival of amyotrophic lateral sclerosis patients. J Neurol Neurosurg Psychiatry. 2011;82:628–34.
   PubMed Web of Science ®Google Scholar
• Desport JC, Preux PM, Truong CT, Courat L, Vallat JM, Couratier P. Nutritional assessment and survival in ALS patients. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1:91–6.
   PubMed Web of Science ®Google Scholar
• Morgan RK, McNally S, Alexander M, Conroy R, Hardiman O, Costello RW. Use of Sniff nasal-inspiratory force to predict survival in amyotrophic lateral sclerosis. Am J Respir Crit Care Med. 2005;171:269–74.
   PubMed Web of Science ®Google Scholar
• Borasio GD, Gelinas D, Yanagisawa N. Mechanical ventilation in amyotrophic lateral sclerosis: a cross-cultural perspective. J Neurol. 1998;245:S7–12.
   PubMed Web of Science ®Google Scholar
• Genton L, Viatte V, Janssens JP, Heritier AC, Pichard C. Nutritional state, energy intakes and energy expenditure of amyotrophic lateral sclerosis (ALS) patients. Clin Nutr. 2011;30:553–9.
   PubMed Web of Science ®Google Scholar
• Worwood AM, Leigh PN. Indicators and prevalence of malnutrition in motor neuron disease. Eur Neurol. 1998;40:159–63.
   PubMed Web of Science ®Google Scholar
• Reuben DB, Tinetti ME. Goal-oriented patient care: an alternative health outcomes paradigm. N Engl J Med. 2012;366:777–9.
   PubMed Web of Science ®Google Scholar
• Mackin GA. Optimizing care of patients with ALS. Steps to early detection and improved quality of life. Postgrad Med. 1999;105: 51–6, 143–6.
   PubMed Web of Science ®Google Scholar
• Turner-Stokes L, Sykes N, Silber E. Long-term neurological conditions: management at the interface between neurology, rehabilitation and palliative care. Clinical medicine (London, England). 2008;8:186–91.
   PubMed Web of Science ®Google Scholar
• Ng L, Khan F. Multidisciplinary care for adults with amyotrophic lateral sclerosis or motor neuron disease. Cochrane Database of Systematic Reviews [Internet]. 2009; (4). Available from: http://onlinelibrary.wiley.com/store/10.1002/14651858.CD007425.pub2/asset/CD007425.pdf?v=1&t=i1lqwntk&s=4838081edec4d56393ed98e12160e0d0ff64d0a6.
   Google Scholar
• Bede P, Oliver D, Stodart J, van den Berg L, Simmons Z, O Brannagáin D, et al. Palliative care in amyotrophic lateral sclerosis: a review of current international guidelines and initiatives. J Neurol Neurosurg Psychiatry. 2011;82:413–18.
   PubMed Web of Science ®Google Scholar
• Connolly S, Galvin M, Hardiman O. End-of-life management in patients with amyotrophic lateral sclerosis. Lancet Neurol. 2015;14:435–2.
   PubMed Web of Science ®Google Scholar
• ProGas Study Group. Gastrostomy in patients with amyotrophic lateral sclerosis: a prospective cohort study. Lancet Neurol. 2015;14:702–9.
   PubMed Web of Science ®Google Scholar