Research Article| Volume 367, P368-374, August 15, 2016

Breaking the news of a diagnosis of motor neurone disease: A national survey of neurologists' perspectives


      • It can be difficult and stressful for neurologists to deliver a terminal diagnosis
      • The multidisciplinary approach is very important in information provision, care and support continuity
      • Neurologists would benefit from education in communication, during and after training
      • The longer the consultation time, the more patients were satisfied with their neurologist’s diagnosis delivery process
      • There is scope for improvement in neurologists responding empathically to the feelings of patient/family


      Communication of the diagnosis of MND is daunting for patients and neurologists. This study aimed to establish a knowledge base of current Australian practice of breaking the news of an MND diagnosis, to assess the neurologists' educational and training needs and to compare the feedback obtained from neurologists and patients to international practice guidelines. An anonymous survey of neurologists was undertaken in Australia (2014).
      73 neurologists responded to this national survey (50.4% response rate). Nearly 70% of neurologists reported finding it “somewhat to very difficult” communicating the MND diagnosis, and 65% reported feeling moderate to high stress and anxiety at the delivery of diagnosis. Compared to international guidelines, areas for improvement include length of consultation, period of follow up and referral to MND associations. Two-thirds of neurologists were interested in further training to respond to patient's emotions and development of best practice guidelines.
      This is the first national study to provide a comprehensive insight into the process of delivering the MND diagnosis from the neurologists' perspective and to make comparisons with those of patients and the international guidelines. This study forms the basis for developing protocols to improve communication skills and alleviate the emotional burden associated with breaking bad news.


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        • Aoun S.M.
        • Bentley B.
        • Funk L.
        • Toye C.
        • Grande G.
        • Stajduhar K.J.
        A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions.
        Palliat. Med. 2013; 27: 437-446
        • Locock L.
        • Brown J.B.
        ‘All in the same boat’? Patient and carer attitudes to peer support and social comparison in motor neurone disease (MND).
        Soc. Sci. Med. 2010; 71: 1498-1505
        • McCluskey L.
        • Casarett D.
        • Siderowf A.
        Breaking the news: a survey of ALS patients and their caregivers.
        Amyotroph. Lateral Scler. 2004; 5: 131-135
        • Aoun S.M.
        • Breen L.J.
        • Howting D.
        • Oliver D.
        • Edis R.
        • Henderson R.
        • et al.
        Receiving the news of a diagnosis of motor neurone disease: what does it take to make it better?.
        Amyotroph Lateral Scler. Frontotemporal Degener. 2016; 17: 168-178
        • Connolly S.
        • Galvin M.
        • Hardiman O.
        End-of-life management in patients with amyotrophic lateral sclerosis.
        Lancet Neurol. 2015; 14: 435-442
        • Hugel H.
        • Grundy N.
        • Rigby S.
        • Young C.A.
        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. Lateral Scler. 2006; 7: 161-166
        • Aoun S.M.
        • Connors S.L.
        • Priddis L.
        • Breen L.J.
        • Colyer S.
        Motor neurone disease family carers' experiences of caring, palliative care and bereavement: an exploratory qualitative study.
        Palliat. Med. 2012; 26: 842-850
        • Schellenberg K.L.
        • Schofield S.J.
        • Fang S.
        • Johnston W.S.W.
        Breaking bad news in amyotrophic lateral sclerosis: the need for medical education.
        Amyotroph Lateral Scler. Frontotemporal Degener. 2014; 15: 47-54
        • Ptacek J.T.
        • Ptacek J.J.
        • Ellison N.M.
        I′m sorry to tell you…” Physicians' reports of breaking bad news.
        J. Behav. Med. 2001; 24: 205-217
        • Baile W.F.
        • Lenzi R.
        • Parker P.A.
        • Buckman R.
        • Cohen L.
        Oncologists' attitudes toward and practices in giving bad news: an exploratory study.
        J. Clin. Oncol. 2002; 20: 2189-2196
        • Orlander J.D.
        • Fincke G.
        • Hermanns D.
        • Johnson G.A.
        Medical residents' first clearly remembered experiences of giving bad news.
        J. Gen. Intern. Med. 2002; 17: 825-840
        • Baile W.F.
        • Buckman R.
        • Lenzi R.
        • Glober G.
        • Beale E.A.
        • Kudelka A.P.
        SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer.
        Oncologist. 2000; 5: 302-311
        • Clayton J.M.
        • Hancock K.M.
        • Butow P.N.
        • Tattersall M.H.
        • Currow D.C.
        • Adler J.
        • et al.
        Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers.
        Med. J. Aust. 2007; 186 (S9, S83-108): S77
        • Miller R.G.
        • Jackson C.E.
        • Kasarskis E.J.
        • England J.D.
        • Forshew D.
        • Johnston W.
        • et al.
        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.
        Neurol. 2009; 73: 1227-1233
        • MND Association (UK)
        Best Practice Guide.
        Author, Nottingham, UK2011
        • Andersen P.M.
        • Borasio G.D.
        • Dengler R.
        • Hardiman O.
        • Kollewe K.
        • Leigh P.N.
        • et al.
        Good practice in the management of amyotrophic lateral sclerosis: clinical guidelines. An evidence-based review with good practice points. EALSC working group.
        Amyotroph. Lateral Scler. 2007; 8: 195-213
        • Anderson P.M.
        • Abrahams S.
        • Borasio G.D.
        • 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: 360-375
        • Van den Berg J.P.
        • Kalmijn S.
        • Lindeman E.
        • Veldink J.H.
        • de Visser M.
        • der Graaff V.
        • et al.
        Multidisciplinary ALS care improves quality of life in patients with ALS.
        Neurol. 2005; 65: 1264-1267
        • Oliver D.J.
        • Turner M.R.
        Some difficult decisions in ALS/MND.
        Amyotroph. Lateral Scler. 2010; 11: 339-343
        • Borasio G.D.
        • Shaw P.J.
        • Hardiman O.
        • Ludolph A.C.
        • Sales Luis M.L.
        • Silani V.
        Standards of palliative care for patients with ALS: results of a European survey.
        Amyotroph Lateral Scler. Other Motor Neuron Disord. 2001; 2: 159-164
        • Hogden A.
        • Greenfield D.
        • Nugus P.
        • Kiernan M.C.
        Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals.
        Patient Prefer Adherence. 2012; 6: 691-701
        • Hogden A.
        • Greenfield D.
        • Nugus P.
        • Kiernan M.C.
        What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives.
        Patient Prefer Adherence. 2012; 6: 829-838