Evidence Table AHP4What is the effectiveness of the Parkinson’s disease nursing specialist care vs. standard care or placebo in the treatment of Parkinson’s disease?

Bibliographic referenceJarman, B., Hurwitz, B., & Cook, A. 2002, “Effects of community based nurses specialising in Parkinson’s disease on health outcome and costs: randomised controlled trial. (Research to evaluate the value of nurse specialists working with GPs with Parkinson Disease patients on outcomes, cost, and wellbeing)”, BMJ, vol. 324, no. 7345, pp. 1072–1075.
Study typeRCT (with 2 year follow-up) nursing specialists vs. GP standard care
Evidence level1+
Number of patientsN=1859 patients with Parkinson’s disease (PD)
➢ N=1041 (56%) nurse specialist group
➢ N=818 (44%) control group

Location: England
Sites: 438 general practices in 9 randomly selected health authority areas
Patient characteristics➢ All general practices in 9 health authorities selected were asked to identify eligible patients based on patients taking one or more anti-parkinsonian drugs
➢ Patients aged 17 years or less were excluded and those with severe mental illness or cognitive impairment sufficient to preclude valid informed consent
➢ No noticeable differences were observed between treatment groups at baseline for age, sex, accommodation, social class, disease duration, disease severity, or drugs
➢ Study sample was representative of population of the England and Wales with Parkinson’s disease in terms of disease duration and age (except with slight under-representation of >85 yrs)
InterventionCommunity based care from nurse specialist: 9 nurses were employed by the university and trained at the Nursing and Midwifery School, University of Sheffield. They completed a course on meeting the special needs of people with Parkinson’s disease and their carers.
ComparisonStandard care from general practitioner
Length of follow-up2 years
Outcome measuresClinical outcomes (inc. Survival) and quality of life outcomes (inc. global health question, PDQ-39, Euroqol) and health care costs
Effect sizeEnd of study data comparing the effectiveness of nursing specialists vs. standard care
Clinical outcomes % (SD)Nurse group (n= 696)Control (n=558)Hazard ratio (95% CI) (nurse vs. control)P value
Stand-up group:
1. No problems248 (35.6)221 (39.6)
2. Without holding on114 (16.4)82 (14.7)1.15 (0.93 to 1.42)0.19
3. Unable or had to hold on329 (47.3)247 (44.3)
Bone fracture during study92 (13.2)62 (11.1)1.20 (0.85 to 1.69)0.31
Mean best hand score45.3 (21.2)46.0 (21.1)−0.70 (−3.25 to 1.84)0.59
Mortality (after 2 years)169 (16.6)146 (18.2)0.91 (0.73 to 1.13)0.38
Mortality (after 4 years)353 (34.7)307 (38.2)0.89 (0.76 to 1.03)0.12
Quality of life measuresNurse groupControl groupDifference (95% CI) (nurse vs. control)P value
Global health 4.79 (1.50) 5.02 (1.38) 0.23 (0.40 to0.06 0.008
Euroqol tariff (high score good)0.37 (0.35)0.39 (0.35)−0.02 (−0.06 to 0.020.30
PDQ (high score bad)
Mobility61.1 (31.9)59.8 (32.9)1.38 (−2.57 to 5.34)0.49
Activities of daily living52.4 (28.6)51.7 (29.9)0.71 (−2.73 to 4.14)0.69
Emotional well-being34.7 (24.7)34.5 (25.8)0.21 (−2.79 to 3.20)0.89
Stigma30.6 (27.5)30.8 (28.7)−0.14 (−3.44 to 3.16)0.93
Social support51.9 (22.1)13.7 (20.8)2.21 (−0.66 to 5.08)0.13
Cognition39.3 (23.2)38.0 (24.4)1.30 (−1.52 to 4.11)0.37
Communication28.6 (24.4)28.7 (25.1)−0.10 (−3.02 to 2.82)0.95
Bodily discomfort45.4 (24.8)43.7 (25.3)1.68 (−1.26 to 4.62)0.26
PDQ-39 summary index39.7 (21.2)39.2 (22.1)0.47 (−2.72 to 3.66)0.77
NHS and local health authority costs (in £000s. Values are mean (max)Nurse group (n=1028)Control group (n=808)Difference (95% CI) (nurse vs. control)P Value
Year preceding study4.05 (55.4)3.48 (35.0)
Year 2 (patients at end of study)5.86 (39.1)5.63 (33.1)
Individual mean increase2.54 (34.6)2.80 (31.6)−0.26 (−0.98 to 0.45)0.47
➢ The patient’s responses to the global health question(a measure of patient’s perception of change in well-being) was statistically significant for the patients receiving the nursing intervention vs. standard care (p=0.008) (thusthe intervention group benefited in subjective well -being)
➢ The study showed that nurse specialists assessed an average of 13.7 patients per week
➢ 75% of patients assessed at home, 14% at general practices, 11% in hospital clinics
➢ Patients in the nurse group received an average of 8 assessments by the nurse per year
➢ The health care costs to NHS and local health authorities did not increase significantly for providing this service
Source of FundingPaul Hamlyn Foundation, the Parkinson’s disease Society, and Britannia Pharmaceuticals
Additional commentsAim: to determine the effects of the community based nurses specialising in Parkinson’s disease on health outcomes and healthcare costs
➢ Sampling frame included all English health authorities in 1995 that did not already have well- developed community-based services of nurse specialists in Parkinson’s disease
➢ Randomly chose nine health authorities out of an eligible 57
Randomisation of patients to control/intervention groups was performed by an independent social survey organization
➢ Trained lay workers employed by an independent survey organization were sent to interview participants in their place of residence and collect information on health outcomes and costs at one and two years
➢ Before each interview the patients were sent questionnaires eliciting information about self- perceived health status
➢ Self-completed questionnaire including: the validated PDQ-39 instrument used for measuring the functioning and well-being of patients with PD (score range 0–100: higher score represents worse functioning), and the Euroqol a health-related quality of life measure (score range −0.59 to +1: higher value represents better quality)
➢ Based in primary care setting
➢ Author’s conclude: “the provision of community based nurses specialising in the care of patients with Parkinson’s disease has little effect on clinical progression of the disease when compared with patient’s receiving standard care from their general practitioner”.
NCC CC ID (Ref Man)223
Bibliographic referenceJahanshahi, M., Brown, R. G., Whitehouse, C., Quinn, N., & Marsden, C. D. 1994, “Contact with a nurse practitioner: A short-term evaluation study in Parkinson’s disease and dystonia”, Behavioural Neurology, vol. 7, no. 3–4, pp. 189–196.
Study typeRCT: questionnaire format nurse practitioner vs. standard care
Evidence level1+
Number of patientsN=40 PD patients
➢ N= 20 intervention group (received contact with nurse practitioner)
➢ N=20 control group (standard care no extra nurse contact)

Location: London, UK
sites: 1
Patient characteristicsCharacteristics
➢ 25 male, 15 female
➢ Mean age 63.7 years
➢ Average age of onset 53.6 years
➢ Average duration of illness 10.1 years (range 1–25 years)
Selection criteria:
➢ Diagnosis of idiopathic disease
➢ Current treatment with dopaminergic medication
➢ Hoehn and Yahr stage of illness II or above
➢ Age less than 70 years
➢ No clinical evidence of dementia
➢ All patients lived within 50 mile radius of hospital

➢ Half the patients were randomly allocated to ‘intervention’ or ‘control’ groups
➢ There were no differences in age, sex, age at onset, or duration of illness
InterventionConsisted of two home visits and five telephone contacts form the nurse practitioner, over 6 months. Each home visit lasted three or more hours depending on the needs of the patient. In the intervening period the nurse practitioner made 5 telephone contacts. In addition to the scheduled contacts, the patients in the intervention group were free to telephone the nurse practitioner at any time during the trial.
All patients completed a set of questionnaires relating to psychological and social functioning on two occasions, separated by an interval of 6 months. For those allocated to the ’intervention’ group the first set of questionnaires were completed before the first contact and the second immediately after the end of this contact with the nurse practitioner.
ComparisonStandard care without nurse practitioner intervention
Length of follow-up6 month follow-up
Outcome measuresPsychosocial variables, practical outcomes, and results of independent assessment
Effect size➢ There was a slight improvement in patients allocated to the intervention group for 7/9 psychosocial measures- these changes did not reach statistical significance (p>0.05)
➢ Greatest change in reduction of anxiety and depression
➢ Patients in the control group showed an improvement in only 3/9 measures and none were significant
The results below were not separated for PD and dystonia groups
The most common information given by the nurse practitioner was practical; regarding income support and mobility allowance
Other common needs concerned the way to obtain a disability sticker for their car, dietary advice, and information regarding holidays for the disabled
Other interventions concerned referrals to other health professionals through the patient’s own GP (in total 22 referrals were arranged in 6 months (18.9% to an OT and 15.6% to a neurologist)
Results of independent assessment questions:
Mean rating of contact was 8.5, half rated 10, “10= very useful”
Aspects of contact rank ordered in terms of usefulness were: ‘opportunity to talk to someone about the illness and the problems caused by it”, “knowing that someone could be contacted if problems arose”, referrals to other health professionals”, “sorting out practical problems”, “information given about the illness and its treatment
88.5% considered the home visits the most useful aspect of the intervention
80.8% thought the duration of contact needed to be prolonged
58% thought the intervention would be useful to other sufferers of PD (mean 9.0)
96.2% of patients agreed this intervention should be an important priority of the Health Service
Source of FundingParkinson’s Disease Society (UK), the Dystonia Society (UK), the Wellcome Trust, Du Pont Pharma and Roche Products Ltd.
Additional commentsAim: to assess the value of access to and contact with a nurse practitioner
➢ Patients recruited from National Hospital for Neurology and Neurosurgery, London
➢ At the end of the trial, the patients allocated to the intervention group were contacted by investigators not involved in the intervention program – asked them 7 questions concerning intervention
➢ Author’s conclusions: “the service was highly valued by the patient, and led to a high rate of new referral to other health-care agencies and take-up of state-provided benefits. However, there was no evidence that these inputs had any significant impact on adjustment and psychological well being on the measures used”.
➢ Longer follow-up period required to see more effects
NCC CC ID (Ref Man)200
Bibliographic referenceReynolds, H., Wilson-Barnett, J., & Richardson, G. 2000, “Evaluation of the role of the Parkinson’s disease nurse specialist”, International Journal of Nursing Studies, vol. 37, no. 4, pp. 337–349.
Study typeRCT: questionnaire to measure the effectiveness of PDNS vs. consultant neurologist care
Evidence level1+
Number of patientsN=185 Parkinson’s disease (PD) patients
➢ N=85 consultant care only (control) (group A)
➢ N=35 Parkinson’s disease nursing specialist (PDNS) care only (group B)
➢ N=65 mainly PDNS, with consultant follow-up (group C)

Location: London
Location: sites: 3
Patient characteristicsMean age in the groups were similar 64–68
Mean time since diagnosis ranged from 4 to 8 years
Sample of 62 males and 46 females

Entry criteria: seen by a consultant at least once for medical assessment and confirmation of a diagnosis of idiopathic PD, not previously seen by PDNS, able to understand requirements of study and give informed consent, no clinical evidence of dementia, new referral to clinic
InterventionParkinson’s disease nursing specialists (PDNS) (specific details of intervention not provided)
ComparisonConsultant neurologist care
Length of follow-upOne year
Outcome measuresParkinson’s disease questionnaire (PDQ), SF-36, Hospital anxiety and depression scale, costs
Effect size Health Outcomes
Baseline scores were analysed for statistically significant differences between groups
➢ Out of 22 dimensions only communication scores on the PDQ were significantly different between groups at baseline (p=0.05) favouring the PDNS group (B)
➢ At the end of study analysis of score differences were performed where baseline scores were deducted from the end of study scores to look at individual change scores
➢ Only 2 out of 22 dimensions reached statistical significance (p=0.05): physical functioning (p=0.02) and general health (p=0.02) both measured by the SF-36 and both favoured the consultant group only

Hospital anxiety
➢ At the end of the study group B maintained median-normal anxiety level and groups A and C maintained median-mild anxiety levels
➢ All median depression scores at baseline and at the end of study were in the normal range
Economic study:
➢ Economic analysis of 47 patients (30 randomised to PDNS and 17 to consultant group)
➢ Cost per month significantly higher in PDNS group (p=0.001)
➢ Mean costs of care were: £53.96 in PDNS and £4.76 in consultant group for first follow-up period
➢ And £66.77 and £5.41 at the second follow-up (p=0.001)
➢ Not known what resources each group consumed before the intervention
Source of FundingNuffield Trust, London
Additional commentsAim: to demonstrate whether there are any differences in outcome from treatment when this is given, primarily by PDNS or specialist neurologist
➢ Patients randomised according to established pattern of care at that centre
➢ Small pilot study was performed to test methods for data collection
Bias potential for sites selected not at random but which promoted PDNS services
185 patients began the study, however only 108 completed (58%)
➢ Study did not use a control centre (centre without PDNS services)
➢ All patients were seen at least twice during the study (but this varied depending on need)
➢ Author’s conclude: “Medical and nursing specialists valued their complementary expertise, and patient and carers responses to consultations also reflect that PDNS’s have particular contributions”.
➢ Author’s conclude: “ given that there were few differences in patient outcomes, it is difficult to recommend the provision of specialist nurses for patients with Parkinson’s disease solely on cost- effectiveness grounds”.
NCC CC ID (Ref Man)744
Bibliographic referenceBell, L. 2004, Changing Roles: The Impact of Parkinson's Disease Nurse Specialists, Parkinson’s Disease Society of the United Kingdom.
Study typeReport
Evidence level4
Number of patientsN/A
Patient characteristicsN/A
InterventionParkinson’s disease Nurse Specialists
Length of follow-upN/A
Outcome measuresdescriptive
Effect sizeEssential Skills of the PDNS:
 • Clinical leadership
 • Research awareness
 • Developing nursing knowledge
 • Providing consultancy
 • Educating patients, carers and colleague
 • Initiating and managing change
 • Evaluating care
➢ The role of the PDNS will depend on local need and the experience and qualifications of the individual nurse
➢ Making and receiving referrals direct creating integrated and responsive Parkinson’s services
➢ Admitting and discharging patients for specified conditions and within agreed protocols- this has highlighted the need for a care pathway
➢ Managing patient caseloads- providing both information and support to patients in their homes, in clinics and in hospitals- under-resourcing is an issue
➢ Prescribing medicines and treatment-to monitor the effectiveness of changes in medication and treatment, and to provide information and education-PDNS will soon be able to prescribe according to the new guidelines for ‘supplementary’ prescribing for non-medical health professionals like nurses and pharmacists to prescribe medication once a doctor has made diagnosis
➢ To use the latest IT to triage patients to the most appropriate health professional-using IT to identify patients at risk and speed up responses to crises
➢ Taking the lead in the way local health services are organized and run
➢ The exact role of the PDNS should be tailored to the needs of the local community and patients
➢ Primary Care Trusts need to ensure nurses’ knowledge and skills match their intended role
Source of FundingParkinson’s Disease Society UK
Additional comments
NCC CC ID (Ref Man)787

From: Evidence Tables

Cover of Parkinson's Disease
Parkinson's Disease: National Clinical Guideline for Diagnosis and Management in Primary and Secondary Care.
NICE Clinical Guidelines, No. 35.
National Collaborating Centre for Chronic Conditions (UK).
Copyright © 2006, Royal College of Physicians of London.

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