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• Perceptions of patients, neurologists, and members of multidisciplinary teams. A collaborative study between the Motor Neurone Disease Association and the Peninsula MND network.
  Stuart Weatherby
  Published on: 24 November 2010

• Published on: 24 November 2010

  Perceptions of patients, neurologists, and members of multidisciplinary teams. A collaborative study between the Motor Neurone Disease Association and the Peninsula MND network.

  • Stuart Weatherby, Consultant Neurologist
  • Other Contributors:
    • Masumi Tanaka Gutiez, Lou Jarrett, Bill Nevin, Jonathan Stewart

  M.Tanaka Gutiez, L.Jarrett, B. Nevin, J. Stewart and S. Weatherby

  Sir, A recent study published in the JNNP suggests that quality of life for people living with motor neuron disease (PwMND) is influenced by their perceptions of social support[1].

  We would like to share the results of a study carried out jointly with the Motor Neurone Disease Association (MNDA) and the peninsula MND network, which fu...

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  M.Tanaka Gutiez, L.Jarrett, B. Nevin, J. Stewart and S. Weatherby

  Sir, A recent study published in the JNNP suggests that quality of life for people living with motor neuron disease (PwMND) is influenced by their perceptions of social support[1].

  We would like to share the results of a study carried out jointly with the Motor Neurone Disease Association (MNDA) and the peninsula MND network, which further highlights the importance of understanding the experience and perceptions of PwMND.

  Stakeholder involvement in service development is recognised as important. Patients and care providers may have different perceptions regarding care needs[2-5]. In designing our service we therefore performed a joint study with the MNDA, to understand the attitudes, perceptions and priorities of PwMND, neurologists and multidisciplinary team (MDT) members.

  PwMND across Devon and Cornwall (N=135) received a questionnaire administered by the MNDA. The questions were based on an audit tool prepared by the MNDA, Standards of Care to Achieve Quality of Life. Questionnaires were also sent to all neurology consultants across Devon and Cornwall (N=16), and to a representative sample of MDT teams in the region (N=30). The questionnaires were divided into six subsections: 1) presentation to diagnosis; 2) diagnosis; 3) post diagnosis; 4) MNDA involvement; 5) interprofessional communication; and 6) overall service. Each questionnaire had a free text section which respondents were encouraged to complete. The response rates for the PwMND, neurologists and MDT teams were 35.6% (48 of 135), 100% (16 of 16), and 70% (21 of 30), respectively.

  A number of issues were highlighted, revealing points of agreement and difference between the perceptions of patients and care providers.

  12 of the 16 neurologists (75%) felt that it was appropriate to give PwMNDs information at diagnosis, however, only 25 of 48 (52.1%) PwMNDs reported information being given and only 7 of 16 (43.8%) of MDT members felt that PwMNDs were well informed. These results correspond with other studies [2;3] . Furthermore, 30 of 48 (62.5%) PwMNDs in our study who were given information would have liked more.

  Despite a consensus amongst neurologists (13 of 16 neurologists (81.3%)) that PwMND should be referred to the MNDA at diagnosis, only 14 of the 48 PwMNDs (29.2%) recalled being referred at that point. Subsequently however, 43 out of 48 PwMND (89.6%) made contact with the MNDA at some point of their disease trajectory and 35 (81.3 %) of these people found it useful.

  Neurologists and MDT members appeared to under appreciate the importance which PwMND attach to their experience around the time of diagnosis (19 of 32 of PwMND comments (59.4%), vs 1 of 13 (7%) neurologists, vs 0% for MDT members).

  When asked to indicate the areas of care most in need of improvement, all groups identified a need to optimise care coordination and follow-up care [12 of 32 comments (38%) for PwMND, 7 of 13 comments (54%) for neurologists, and 8 of 13 comments (64%) for MDT members].

  In order to offer patient-centred care it is necessary to understand and appreciate the perceptions of the patient. This however can be difficult, particularly for an uncommon condition such as motor neurone disease (MND). Our findings demonstrate the value that PwMND attach to input of the MNDA in their care. They also highlight that perspectives can differ between care givers and care receivers, and thus emphasise the importance of involving all stakeholders in developing services. PwMND attach great importance to issues surrounding their care at diagnosis, and this appeared to be underestimated by care providers. As a consequence of this study the MND Network care coordinator offers PwMND a visit at home or in a clinical setting a few weeks post diagnosis. To improve coordination of care, complex care pathways have been developed and are put into action through regular multidisciplinary meetings in the various regions of the Peninsula.

  Competing Interest: None declared.

  Licence for Publication: The Corresponding Author has the right to grant on behalf of all authors and does grant on behalf of all authors, an exclusive licence (or non exclusive for government employees) on a worldwide basis to the BMJ Publishing Group Ltd to permit this article (if accepted) to be published in JNNP and any other BMJPGL products and sublicences such use and exploit all subsidiary rights, as set out in our licence. (http://group.bmj.com/products/journals/instructions-for-authors/licence- forms)

  Reference List

  1. Matuz T, Birbaumer N, Hautzinger M, Kubler A. Coping with amyotrophic lateral sclerosis: an integrative view. J Neurol Neurosurg Psychiatry 2010;81:893-8.

  2. Hancock K, Clayton JM, Parker SM, Walder S, Butow PN, Carrick S, Currow D, Ghersi D, Glare P, Hagerty R, Tattersall MH. Discrepant perceptions about end-of-life communication: a systematic review. J Pain Symptom Manage 2007;34:190-200.

  3. Hancock K, Clayton JM, Parker SM, Wal dS, Butow PN, Carrick S, Currow D, Ghersi D, Glare P, Hagerty R, Tattersall MH. Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliat Med 2007;21:507-17.

  4. McCluskey L, Casarett D, Siderowf A. Breaking the news: a survey of ALS PwMNDs and their caregivers. Amyotroph Lateral Scler Other Motor Neuron Disord 2004;5:131-5.

  5. McIlfatrick S. Assessing palliative care needs: views of PwMNDs, informal carers and healthcare professionals. J Adv Nurs 2007;57:77-86.

  Conflict of Interest:

  None declared

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  Conflict of Interest:
  None declared.

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