The development of the UK National Institute of Health and Care Excellence evidence-based clinical guidelines on motor neurone disease

References

• Andersen PM, Abrahams S, Borasio GD, de Carvalho M, Chio A, Van Damme P, The EFNS Task Force on Diagnosis and Management of Amyotrophic Lateral Sclerosis, 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
• Miller RG, Rosenberg JA, Gelinas DF, 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: ALS Practice Parameters Task Force. Neurology. 1999;52:1311–23.
   PubMed Web of Science ®Google Scholar
• National Institute for Health and Care Excellence. Guidance on the use of Riluzole (Rilutek) for the treatment of Motor Neurone Disease. TA20; 2001. Available at: www.nice.org.uk/Guidance/ta20
   Google Scholar
• National Institute for Health and Clinical Excellence. Motor neurone disease. The use of non invasive ventilation in the management of motor neurone disease. NICE Clinical guideline 105 NICE 2010
   Google Scholar
• National Institute for Health and Care Excellence. Motor neurone disease: assessment and management. NICE Guideline NG 42. NICE. 2016. Available at: www.nice.org.uk/guidance/NG42
   Google Scholar
• National Institute for Health and Clinical Excellence. Developing NICE guidelines: the manual. London. NICE. 2014
   Google Scholar
• Guyatt GH, Oxman AD, Vist GE, Kunz R, Falck-Ytter Y, Alonso-Coello P, et al. GRADE: an emerging consensus on rating quality of evidence and strength of recommendations. Br Med J. 2008; 336:924–6.
   PubMed Web of Science ®Google Scholar
• Hugel H, Grundy N, Rigby S, Young CA. How does current care practice influence the experience of a new diagnosis of motor neuron disease? A qualitative study of current guidelines-based practice. Amyotroph Lat Scler. 2006;7:161–6.
   PubMed Web of Science ®Google Scholar
• O’Brien MR, Whitehead B, Jack BA, Mitchell JD. From symptom onset to a diagnosis of amyotrophic lateral sclerosis/motor neuron disease: experiences of people with ALS/MND and family carers – a qualitative study. Amyotroph Lat Scler. 2011;12:97–104.
   PubMed Web of Science ®Google Scholar
• Mistry K, Simpson J. Exploring the transitional process from receiving a diagnosis to living with motor neurone disease. Psychol Health. 2013;28:939–53.
   PubMed Web of Science ®Google Scholar
• Hogden A, Greenfield D, Nugus P, Kiernan MC. Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals. Pat Pref Adher. 2012;6:691–701.
   PubMed Web of Science ®Google Scholar
• O’Brien MR, Whitehead B, Jack B, Mitchell JD. Multidisciplinary team working in motor neuron disease: patient and carer views. Br J Neurosci Nurs. 2011;7:580–5.
   Google Scholar
• Aridegbe T, Kandler R, Walters SJ, et al. The natural history of motor neuron disease: assessing the impact of specialist care. Amyotroph Lateral Scler Frontotemporal Degener. 2013;14:13–9.
   PubMed Web of Science ®Google Scholar
• Traynor BJ, et al. Effect of a multidisciplinary amyotrophic lateral sclerosis (ALS) clinic on ALS survival: a population based study, 1996–2000. J Neurol Neurosurg Psychiatry. 2003;74:1258–61.
   PubMed Web of Science ®Google Scholar
• Rooney J, Byrne S, Heverin M, et al. A multidisciplinary clinic approach improves survival in ALS: a comparative study of ALS in Ireland and Northern Ireland. J Neurol Neurosurg Psychiatry. 2015;86:496–503.
   PubMed Web of Science ®Google Scholar
• Chio A, Bottacchi E, Buffa C, Mutani R, Mora G. Positive effects of tertiary centres for amyotrophic lateral sclerosis on outcome and use of hospital facilities. J Neurol Neurosurg Psychiatry. 2006;77:948–50.
   PubMed Web of Science ®Google Scholar
• Aoun SM, Connors SL, Priddis L, Breen LJ, Colyer S. Motor Neurone Disease family carers’ experiences of caring, palliative care and bereavement: an exploratory qualitative study. Pall Med. 2012;26:842–50.
   PubMed Web of Science ®Google Scholar
• Gent C, McGarry J, Pinnington L. Motor neurone disease: carers’ experiences, behaviour and coping methods. Br J Neurosci Nurs. 2009;5:567–73.
   Google Scholar
• Herz H, McKinnon PM, Butow PN. Proof of love and other themes; A qualitative exploration of caring for people with motor neurone disease. Prog Pall Care. 2006;14:209–14.
   Google Scholar
• Hogden A, Greenfield D, Nugus P, Kiernan MC. What are the roles of carers in decision-making for amyotrophic lateral sclerosis multidisciplinary care? Patient Prefer Adherence. 2013;7:171–81.
   PubMed Web of Science ®Google Scholar
• Ray RA, Brown J, Street AF. Dying with motor neurone disease, what can we learn from family caregivers? Health Expect. 2014;17:466–76.
   PubMed Web of Science ®Google Scholar
• Gruis KL, Wren PA, Huggins JE. Amyotrophic lateral sclerosis patients’ self-reported satisfaction with assistive technology. Muscle Nerve. 2011;43:643–7.
   PubMed Web of Science ®Google Scholar
• Peters TL, Floeter MK. Usage of support services in primary lateral sclerosis. Amyotroph Lateral Scler. 2009;10:187–91.
   PubMed Web of Science ®Google Scholar
• Dorst J, Cypionka J, ludoph AC. High-caloric food supplements in the treatment of amyotrophic lateral sclerosis: a prospective interventional study. Amyotroph Lateral Scler Frontotemporal Degener. 2013;14:533–6.
   PubMed Web of Science ®Google Scholar
• Jackson CE, Gronseth G, Rosenfeld J, Barohn RJ, Dubinsky R, Simpson CB, et al. Randomized double-blind study of botulinum toxin type B for sialorrhea in ALS patients. Muscle Nerve. 2009;39:137–43.
   PubMed Web of Science ®Google Scholar
• Young CA, Ellis C, Johnson J, Sathasivam S, Pih N. Treatment for sialorrhea (excessive saliva) in people with motor neuron disease/amyotrophic lateral sclerosis. Cochrane Database Syst Rev. 2011; Issue CD006981. DOI: 10.1002/14651858.CD006981.pub2.
   Web of Science ®Google Scholar
• Baxter SK, Baird WO, Thompson S, Bianchi SM, Walters SJ, Lee E, et al. Use of non-invasive ventilation at the end of life. Pall Med. 2013;27:878.
   PubMed Web of Science ®Google Scholar
• Faull C, Rowe Haynes C, Oliver D. issues for palliative medicine doctors surrounding the withdrawal of non-invasive ventilation at the request of a patient with motor neurone disease: a scoping study. BMJ Supp Pall Care. 2014;4:43–9.
   PubMedGoogle Scholar
• Association for Palliative Medicine. Withdrawal of assisted ventilation at the request of a patient with motor neurone disease: guidance for professionals. Association for Palliative Medicine of Great Britain and Ireland. 2015.
   Google Scholar
• Abrahams S, Newton J, Niven E, Foley J, Bak TH. Screening for cognition and behaviour changes in ALS. Amyotroph Lateral Scler Frontotemporal Degener. 2014;15:9–14.
   PubMed Web of Science ®Google Scholar
• Elamin M, bede P, Montuschi A, Pender N, Chio A, Hardiman O. predicting prognosis in amyotrophic lateral sclerosis: a simple algorithm. J Neurol. 2015;262:1447–54.
   PubMed Web of Science ®Google Scholar
• Haines A, O’Flynn N, McDermott C, Oliver DJ. Multidisciplinary care in people with motor neurone disease: a cost –utility analysis. 2017. Submitted for publication.
   Google Scholar