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Parkinson’s Disease Nurse Specialists
- C E Clarke, D G MacMahon, L J Findley, L Osborne, S Thomas, L Kelly (30 May 2002)
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Appropriate patient selection and training are needed for Parkinson nurse specialist
- Frits J Huyse, Peter de Jonge, Joris PJ Slaets (16 June 2002)
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C E Clarke, Reader in Clinical Neurology City Hospital, Dudley Road, Birmingham, B18 7QH, D G MacMahon, L J Findley, L Osborne, S Thomas, L Kelly
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EDITOR - We are grateful to Jarman and colleagues for demonstrating the beneficial effects of Parkinson's Disease (PD) Nurse Specialists on patient well being. We feel that this having been achieved at no additional cost is very encouraging.1 However, we believe that their study significantly underestimates the potential effectiveness of the nurses, many of whom have been employed in the UK in the last decade, for a number of reasons. As the authors of the study admit, the nurses were evaluated over the first two years of their practice when they were still on their learning curve. It is the common experience of PD Nurse Specialists that it takes around two years to reach their full level of effectiveness, even after attendance at a nationally recognised training course (e.g. ENB A43). So in the trial they may not have been working to their full capacity. This will have seriously underestimated their benefits on quality of life and even mortality. In a condition with survival in the region of 15 years, this two year study is notably short. Empirically it would seem likely that the benefits of such nurses will be more marked in later disease once postural instability, falls, and other complications begin, often leading to fractures and fatalities. This suggests that a much longer prospective study should have been performed. In particular, one would consider that the value of patient and carer education would take a considerable period to be seen. There have been claims that selegiline is neuroprotective for some years, although this has not been conclusively proved. The withdrawal of many patients from selegiline in the UK was prompted by the Parkinson's Disease Research Group’s trial apparently showing increased mortality in selegiline treated patients.2 A later analysis corrected for baseline covariates failed to confirm this3 and a meta-analysis showed no effect of selegiline on mortality.4 If selegiline is neuroprotective, the withdrawal of more patients in the nurse-treated group from selegiline may have led to an artefactual increase in mortality in the nurse group thereby masking any potential beneficial effect they may have had on mortality. We believe the authors do have data to support this suggestion in an unpublished subgroup analysis. In clinical practice, most PD Nurse Specialists work closely with consultant neurologists and geriatricians who provide advice on diagnostic and treatment issues. However, this study was performed in a primary care setting so it is unlikely that such access was available to at least some of the nurses in the trial. This could have seriously impaired their effectiveness in this trial setting. The authors raise the issue of the diagnostic error rate in general practice which was shown in a recent study to be as high as 47%.5 This should not have affected the trial as randomisation should have ensured that equal numbers of misdiagnosed cases occurred in each arm. However, this was not documented in the report and imbalance at baseline could have confounded the overall results. The authors acknowledge the possibility of contamination of the control group since nurses may have been working with other patients in the same practice. Whilst the nurses themselves may have excluded contact with controls, the individual general practitioners will have learned from their possibly improved experience with nurse-treated patients and applied this to control patients. Superficial inspection suggests that this is a trial of 1028 patients randomised to PD Nurse Specialists and 808 to standard medical care. However, a case can be made for this being a cluster randomised trial of just nine nurses versus control. In this case the trial may have been seriously underpowered to detect the small but clinically relevant effects that the nurses may have had on quality of life and mortality. Further long-term studies of larger numbers of fully trained PD Nurse Specialists would be required if more precise estimates of their effects on quality of life, health economics and mortality are required. Meanwhile we have clinical and anecdotal evidence of the positive contribution that these specialist nurses can make and the valuable results of this study confirm that they are cost neutral; a ‘win-win’ scenario for patients, clinicians and government. C E Clarke D G MacMahon L J Findley L Osborne S Thomas L Kelly 1. Jarman B, Hurwitz B, Cook A, Bajekal M, Lee A. Effects of community based nurses specialising in Parkinson's disease on health outcome and costs: randomised controlled trial. British Medical Journal 2002;324:1072-1075. 2. Lees AJ, Parkinson's Disease Research Group of the United Kingdom. Comparison of the therapeutic effects and mortality data of levodopa and levodopa combined with selegiline in patients with early, mild Parkinson's disease. British Medical Journal 1995;311:1602-1607. 3. Ben-Shlomo Y, Churchyard A, Head J, Hurwitz B, Overstall P, Ockelford J, et al. Investigation by Parkinson's Disease Research Group of United Kingdom into excess mortality seen with combined levodopa and selegiline treatment in patients with early, mild Parkinson's disease: further results of randomised trial and confidential inquiry. BMJ 1998;316(7139):1191-6. 4. Counsell C. Effect of adding selegiline to levodopa in early, mild Parkinson's disease. British Medical Journal 1998;317:1586. 5. Meara J, Bhowmick B, Hobson P. Accuracy of diagnosis in patients with presumed Parkinson's disease. Age and Ageing 1999;28:99-102. |
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Frits J Huyse, Associate professor Vrije Universiteit Medisch Centrum Amsterdam 1007MB, Peter de Jonge, Joris PJ Slaets
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Dear Sir Jarman e.a. report restricted effects of a nurse-guided intervention in Parkinson patients (1). There is an effect on a single patient-reported measure of well-being (p-value 0.008; 95% CI:-0.40 to –0.06). On an interview-based assessment of patient well-being with the Euroqol no effects were found. It is unclear what the clinical meaning of this outcome is. Besides the fact that the finding could be related to multiple testing (Bonferoni effect), we feel there are two major problems which might have inflated the results. First, fifty percent of the patients suffer less than 5 years from the disease; 46% had no problems with standing, 84% had monotherapy and 34% were younger than 70 years of age. In other words, their study sample consisted of a large group of patients with early stage Parkinson disease and a simple medical regimen. In our opinion, the authors should have considered additional selection criteria to select patients who could really benefit from care coordination: i.e. patients with physical and untreated psychiatric co-morbid conditions leading among other to poor compliance (2,3,4,5). The finding of no effects in the current study sample may simply have been due to too broad inclusion criteria, including patients who could not benefit of the intervention, leading to a diffusion of the effects of the intervention. Information concerning the effects in subgroups would be helpful for future studies. Second, the authors report that the nurses had a specific training as they were relative unskilled. Nothing is mentioned about the capacity of the nurses to assess factors which interfere for instance through compliance with the outcome of the disease, such as restrictions of cognitive capacity, depression or anxiety. Nor is it mentioned whether the nurses were skilled in the practical application of the biopsychosocial model crucial in the treatment of chronic illness. Nor is mentioned whether these nurses had supervisors trained in the neurological, the psychiatric and geriatric sequellae of Parkinson disease. The finding of no effects may therefore have been due to the lack of operationalisation of appropriate interventions complementary to the standard care. The study seems to focus on the problems of the UK health care system, where doctors simply do not get time for their patients. It would have been more appropriate if the selection of patients would have been based on their care needs and implemented by nurses trained in the coordination of care in patients in need of long term care. Frits J Huyse MD PhD
Peter de Jonge MD PhD
Joris PJ Slaets MD PhD
References 1. Jarman B, Hurwitz B, Cook A, Madhavi, Alison L. (2002). Effects of community based nurses specializing in Parkinson’s disease on health outcome and costs: randomised controlled trial. BMJ 324:1072-80. 2. DiMatteo, M.R., Lepper, H.S.& Croghan, T.W. (2000). Depression is a risk factor for noncompliance with medical treatment: meta-analysis of the effects of anxiety and depression on patiënt adherence. Archives of Internal Medicine, 160, 2101-7. 3. De Jonge P, Huyse FJ, Slaets JP, Herzog T, Lobo A, Lyons JS, Opmeer BC, Stein B, Arolt V, Balogh N, Cardoso G, Fink P, Rigatelli M, van Dijck R and Mellenbergh GJ: Care complexity in the general hospital: results from a European study. Psychosomatics 42(3): 204-212, 2001. 4. Huyse FJ, Lyons JS, Stiefel FC, Slaets JPJ, de Jonge P, Fink P, Gans ROB, Guex P, Herzog Th, Lobo A, Smith GC and Strack van Schijndel R. "INTERMED": A method to assess health service needs: I. Development and reliability. Gen Hosp Psychiatry 21, 39-48, 1999 5. Huyse FJ, Lyons JS, Stiefel FC, Slaets JPJ, de Jonge P, Latour C: Operationalizing the Biopsychosocial Model. The INTERMED. Editorial. Psychosomatics 42-1:5-13, 2001 |
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