Age and Ageing Advance Access originally published online on April 3, 2007
Age and Ageing 2007 36(3):240-242; doi:10.1093/ageing/afm040
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NICE guideline for Parkinson's disease
Parkinson's disease is one of the commonest chronic neurological conditions, affecting up to 160/100,000 of the general population. Prevalence rises sharply with age with up to 2% of the population aged 80 years and over affected. The National Institute of Clinical Excellence (NICE) guideline for Parkinson's disease (PD) was published in June 2006 and covers a wide spectrum of clinical management including diagnosis, pharmacological and non-pharmacological therapies and palliative care [1]. Of particular interest is the focus on service delivery and the emphasis on multi-disciplinary care.A key recommendation is that PD patients should be referred quickly and untreat to a specialist for diagnosis and ongoing follow-up. This is based on the recognition that the diagnosis of PD remains clinical and can be challenging, with substantial error rates reported in both post-mortem and community-based series [2, 3]. In practice, it is often difficult to differentiate true parkinsonism from other tremor disorders, and the guideline recommends that 123I-FP-CIT single photon emission computed tomography should be made available to specialists with expertise in its use and interpretation. Because of the psychological stress of diagnostic delay it is suggested that all patients with suspected PD are seen within 6 weeks of referral (2 weeks for complex cases). It also emphasises that regular specialist follow-up is required to review the diagnosis. Frequency of follow-up may be as little as once in 6 to 12 months for patients with mild symptoms, but could be as often as once in 2 to 3 months for those starting pharmacological treatment, or with complex disease.
Another key recommendation is that people with PD should have regular access to specialist nursing care, occupational therapy, physiotherapy and speech and language therapy. The guideline recognises that more evidence of effectiveness is required in these areas, but the experience of the clinicians on the guideline development group (in common with most specialists managing PD) led to their support for therapy interventions, nonetheless.
Widespread implementation of the above recommendations on service delivery will be challenging. Whilst the availability of specialist PD services has increased substantially over the past decade, there are still large areas of the country without ready access. Nearly 20% of patients are currently never referred for specialist opinion [4]. The 6-week limit for first specialist review will be seen as unrealistic by some in already overstretched services and raises questions of equity for patients with other conditions. There is also a view that, in the absence of any proven neuroprotective therapy, urgent assessment is rarely required. This, however is to underestimate the substantial anxiety and distress that many patients experience whilst awaiting specialist opinion. The waiting for the first assessment was raised as one of the most significant issues by a ‘focus group’ of patients in my own service despite our waiting time already being within 6 weeks. The Parkinson's Disease Society (PDS) has welcomed the 6-week limit but has pointed out that current practice is well short of this target. PDS research showed that only 4% of people referred to a neurologist had an appointment within 6 weeks and over 50% waited over 12 weeks [4]. Waiting times for Geriatric medicine were rather better, but 44% of people referred waited for over 6 weeks, and 13% waited over 12 weeks. The PDS also warns that, although there are currently 220 PD Nurse Specialists (PDNS) employed across the United Kingdom, there will need to be significantly more in order that all people with PD have access to this key practitioner. All of the recommendations for audit in the guideline are concerned with the quality of service delivery reflecting the fact that this is seen as the key priority for implementation.
Following diagnosis, the importance of effective communication of that diagnosis and of the therapeutic options is rightly highlighted. The multinational Global PD Survey found that one of the most important factors affecting health-related quality of life was ‘satisfaction with explanation of the condition at diagnosis’ [5]. The guideline's point that discussions ‘should be aimed at achieving a balance between the provision of honest, realistic information about the condition and the promotion of a feeling of optimism’ is an important one and this requires sensitive handling by an experienced practitioner. The choice of initial therapy, and indeed, when to start therapy, will depend on a variety of factors including a trade-off between short and longer-term gains and should be made in partnership with the patient and, where appropriate, their carer or family. Provision of information and a point of contact is a major role which can be fulfilled by a PDNS.
When considering symptomatic drug therapy for both early and complex PD, the guideline can best be described as ‘permissive’. The relative lack of comparative evidence between different classes of drugs precludes a firm recommendation for any one therapeutic strategy. Hence the guideline states that levodopa, dopamine agonists and monamine oxidase type B (MAOB) inhibitors ‘may’ be used as a symptomatic treatment for early PD. The use of anticholinergics, however, is rightly cautioned against, particularly in the elderly due to their potential to cause neuropsychiatric side effects. Likewise dopamine agonists, MAOB inhibitors, catechol-O-methyl transferase inhibitors and amantadine ‘may’ be used as adjunctive therapy to levodopa in later complex disease. Given the evidence base, these recommendations are entirely sensible and recognise the need to individually assess each patient and involve them in therapeutic decisions. The guideline also comments that the ongoing PD MED trial may help to inform these decisions [6]. The danger associated with ‘drug holidays’ or, more commonly, disruption to patients’ medication regimens when admitted to hospital or a care home, and the subsequent risk of neuroleptic malignant syndrome are highlighted. This is a very real issue for patients admitted acutely to hospital and one which urgently needs addressing.
In keeping with the recent change in focus amongst researchers and clinicians involved in PD, the guideline has a major section on the non-motor manifestations of the illness. It is now recognised that PD is much more than a ‘movement’ disorder alone and that the non-motor features are responsible for much of the impact on quality of life. These include mental health problems, falls, sleep disturbance, autonomic disturbance and pain and each is considered in the guideline. Depression is common affecting 40–50% of patients in all stages of the disease and may precede the onset of motor symptoms [7]. Despite this, there is a surprising paucity of evidence for therapeutic intervention for depression in PD, and the guideline makes a plea for further research to establish safe and effective treatment. In many cases, neuropsychiatric problems become prominent as the disease progresses, with the emergence of psychosis (including drug-related) and dementia. Psychotic symptoms may develop in up to 50% of patients and can be challenging to manage [8]. Again, good evidence for management is often lacking. The best evidence is for the use of clozapine, but the guideline acknowledges that this is difficult in practice due to the requirement for mandatory registration and intense monitoring to detect the side effect of agranulocytosis. The advice is therefore pragmatic rather than evidence-based and includes the gradual and phased withdrawal of anti-parkinsonian medication. It is recognised that quetiapine is widely used for this indication and is thought to be relatively safe. Dementia is also common and may develop in 48–80% of patients [9]. This is associated with reduced quality of life for both patients and their carers. The guideline highlights the fact that there is evidence from randomised placebo-controlled trials for the effectiveness and safety of cholinesterase inhibitors in treating not only cognitive decline but also psychotic symptoms. At present, only rivastigmine has a license in the United Kingdom for use in PD dementia. Given the dreadful impact that dementia can have on patients and carers, it is gratifying that the guideline recommends that cholinesterase inhibitors should be available for use. In view of the fact that it is difficult to predict individual response, however, there is a recommendation for further research in this area.
A short chapter on the need for palliative care recognises its importance in the management of PD. This is particularly so when patients have advanced to the stage where they can no longer tolerate adequate dopaminergic therapy, or have advanced co-morbidity [10]. It emphasises, however, that palliative care is not just an end-of-life issue but should be considered at all stages of the disease. In practice, this judgment needs to be made on an individual basis as it will not be appropriate for all patients.
The publication of the guideline is welcome and establishes a benchmark which should encourage the development of improved services for people with PD and their carers. The scope of the guideline is testimony to the complexity of PD and the fact that this is much more than just a disorder of movement: increasing attention is now focused on the ‘non-motor’ and neuropsychiatric aspects of the condition as important determinants of quality of life. In addition, the diagnosis can often be far from straightforward and requires experience and sensitive handling. Because of this a major theme of the guideline is the need for specialist care. A ‘specialist’, however, is not defined beyond someone with expertise in treating the condition. Modernising Medical Careers and the move towards accredited, competency-based training provides an opportunity for the management of movement disorders, including PD, to come of age and develop as a sub-specialty in the same way as has occurred for stroke medicine. There are already many good examples of integrated, multi-disciplinary team-based services managing PD, but this model is still far from universal and thus represents one of the principal challenges to implementation. Geriatricians are particularly well placed in this regard as holistic, team-based working is integral to the ethos of the specialty. Many neurology services are less well served but there may be an opportunity to further foster links between the two disciplines to deliver an integrated service for patients.
Conflict of interest
Dr. Stewart attended two meetings of the NICE Guideline Development Group as a deputy for the British Geriatrics Society representative.
Acknowledgements
I thank Dr Graeme Macphee and Dr Peter Fletcher for their helpful comments.
Mansionhouse Unit, Victoria Infirmary, Glasgow, UK
Email: David.Stewart{at}sgh.scot.nhs.uk
References
- National Collaborating Centre for Chronic Conditions. Parkinson's Disease: National Clinical Guideline for Management in Primary and Secondary Care (2006) London: Royal College of Physicians.
- Hughes AJ, Daniel SE, Kilford L, et al. Accuracy of clinical diagnosis of idiopathic Parkinson's disease: a clinico-pathological study of 100 cases. J Neurol Neurosurg Psychiatry (1992) 55:181–4.
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[Abstract/Free Full Text] - Parkinson's Disease Society. NICE Guideline for Diagnosis and Management of Parkinson's Disease. (2007) www.parkinsons.org.uk/Templates/Internal.asp?NodeID=101412 (25 February 2007, date last accessed).
- The Global Parkinson's Disease Survey (GPDS) Steering Committee. Factors impacting on quality of life in Parkinson's disease; results from an international survey. Mov Disord (2002) 17:60–7.[CrossRef][Web of Science][Medline]
- Birmingham Clinical Trials Unit. (2007) www.pdmed.bham.ac.uk/ (25 February 2007, date last accessed).
- Goetz C, Koller WC, Poewe W, et al. Treatment of depression in idiopathic Parkinson's disease. Mov Disord (2002) 17((Suppl. 4)):S112–9.[Medline]
- Fenelon G, Mahieux F, Huon R, et al. Hallucinations in Parkinson's disease: prevalence, phenomenology and risk factors. Brain (2000) 123:733–45.
[Abstract/Free Full Text] - Aarsland D, Andersen K, Larsen JP, et al. Prevalence and characteristics of dementia in Parkinson disease: an 8-year prospective study. Arch Neurol (2003) 60:387–92.
[Abstract/Free Full Text] - MacMahon DG, Thomas S. Practical approach to quality of life in Parkinson's disease: the nurse's role. J Neurol (1998) 245((Suppl. 1)):S19–22.[CrossRef][Web of Science][Medline]
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