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Parkinson’s disease: diagnosis and management in primary and secondary care [CG35]

Measuring the use of this guidance

Recommendation: 1.1.1.3

Because people with PD may develop impaired cognitive ability, a communication deficit and/or depression, they should be provided with: • both oral and written communication throughout the course of the disease, which should be individually tailored and reinforced as necessary • consistent communication from the professionals involved

What was measured: Newly diagnosed patients who were provided with written information
Data collection end: November 2011
61%
Area covered: National
Source: UK Parkinson's Audit

What was measured: Proportion of Parkinson's clinics that had written information about Parkinson’s and Parkinson’s medication routinely available all or most of the time.
Data collection end: September 2015
82.4%
Area covered: National
Source: UK Parkinson's Audit

What was measured: Proportion of people with Parkinson’s disease who received enough information about Parkinson’s on diagnosis.
Data collection end: September 2015
64.9%
Area covered: National
Source: UK Parkinson's Audit


Recommendation: 1.1.1.6

People with PD should be offered an accessible point of contact with specialist services. This could be provided by a Parkinson’s disease nurse specialist

What was measured: Patients with PD under care of neurologists who had seen a PD nurse specialist in the last year
Data collection end: November 2011
79%
Area covered: National
Source: UK Parkinson's Audit

What was measured: Patients with PD under care of elderly care who had seen a PD nurse specialist in the last year
Data collection end: November 2011
68%
Area covered: National
Source: UK Parkinson's Audit

What was measured: Newly diagnosed patients who were offered PD nurse specialist contact
Data collection end: November 2011
62%
Area covered: National
Source: UK Parkinson's Audit

What was measured: Services that have equitable access to PD nurse specialist
Data collection end: November 2011
75%
Area covered: National
Source: UK Parkinson's Audit

What was measured: Proportion of people with Parkinson's disease who had access to a Parkinson’s nurse in Elderly Care and Neurology services.
Data collection end: September 2015
94.1%
Area covered: National
Source: UK Parkinson's Audit


Recommendation: 1.1.1.7

All people with PD who drive should be advised to inform the Driver and Vehicle Licensing Agency (DVLA) and their car insurer of their condition at the time of diagnosis.

What was measured: Proportion of drivers with Parkinson's disease given verbal and/or written advice about contacting the DVLA (or DVA) and car insurance company.
Data collection end: November 2011
54%
Data collection end: September 2015
73.4%
Area covered: National
Source: UK Parkinson's Audit


Recommendation: 1.2.2.1

People with suspected PD should be referred quickly and untreated to a specialist with expertise in the differential diagnosis of this condition.

What was measured: Patients who were referred untreated
Data collection end: November 2011
93%
Area covered: National
Source: UK Parkinson's Audit

What was measured: Patients who were seen within 6 weeks of referral
Data collection end: November 2011
69%
Area covered: National
Source: UK Parkinson's Audit

What was measured: Proportion of people with suspected Parkinson’s disease who are seen within 6 weeks of GP referral.
Data collection end: April 2009
77%
Number that met the criteria: 10 / 13
Data collection end: June 2011
100%
Number that met the criteria: 5 / 5
Area covered: Local
Source: Agha, R. et al (2012) Improving Compliance with NICE Guidelines on Parkinson's Disease: A Quality Improvement Study Annals of Medicine and Surgery


Recommendation: 1.2.4.1

The diagnosis of PD should be reviewed regularly and re-considered if atypical clinical features develop.

What was measured: Proportion of PD patients under neurologists who have had medical review within last year
Data collection end: November 2011
89%
Data collection end: September 2015
98.3%
Area covered: National
Source: UK Parkinson's Audit

What was measured: Proportion of PD patients under elderly care team who have had medical review within last year
Data collection end: November 2011
94%
Area covered: National
Source: UK Parkinson's Audit

What was measured: Proportion of services that keep their patients under 6-12 month review
Data collection end: November 2011
94%
Area covered: National
Source: UK Parkinson's Audit

What was measured: Propportion of audited services that can provide specialist review at home
Data collection end: November 2011
46%
Area covered: National
Source: UK Parkinson's Audit

What was measured: Proportion of people with Parkinson’s disease who are reviewed at 6- to 12 month intervals.
Data collection end: April 2009
77%
Number that met the criteria: 10 / 13
Data collection end: June 2011
100%
Number that met the criteria: 13 / 13
Area covered: Local
Source: Agha, R. et al (2012) Improving Compliance with NICE Guidelines on Parkinson's Disease: A Quality Improvement Study Annals of Medicine and Surgery

What was measured: Proportion of PD patients under elderly care team who have had medical review within last year.
Data collection end: September 2015
98.9%
Area covered: National
Source: UK Parkinson's Audit


Recommendation: 1.2.10.1

Acute levodopa and apomorphine challenge tests should not be used in the differential diagnosis of parkinsonian syndromes.

What was measured: Proportion of people with suspected Parkinson’s disease who are not offered acute levodopa- and/or apomorphine-challenge tests for the differential diagnosis of parkinsonian syndromes.
Data collection end: April 2009
92%
Number that met the criteria: 12 / 13
Data collection end: June 2011
100%
Number that met the criteria: 10 / 10
Area covered: Local
Source: Agha, R. et al (2012) Improving Compliance with NICE Guidelines on Parkinson's Disease: A Quality Improvement Study Annals of Medicine and Surgery


Recommendation: 1.4.2.1

Levodopa may be used as a symptomatic treatment for people with early PD

What was measured: Patients with a new (< 1 year) diagnosis of Parkinson’s who were on Levodopa + PDI prescribed by neurologists
Data collection end: November 2011
48.4%
Number that met the criteria: 136 / 281
Area covered: National
Source: UK Parkinson's Audit

What was measured: Patients with a new (< 1 year) diagnosis of Parkinson’s who were on Levodopa + PDI prescribed by elderly care physicians
Data collection end: November 2011
58.29%
Number that met the criteria: 225 / 386
Area covered: National
Source: UK Parkinson's Audit


Recommendation: 1.4.3.1

Dopamine agonists may be used as a symptomatic treatment for people with early PD

What was measured: Patients with a new (< 1 year) diagnosis of Parkinson’s who were on dopamine agonists prescribed by neurologists
Data collection end: November 2011
24.2%
Number that met the criteria: 68 / 281
Area covered: National
Source: UK Parkinson's Audit

What was measured: patients with a new (< 1 year) diagnosis of Parkinson’s who were on dopamine agonists prescribed by elderly care physicians
Data collection end: November 2011
15.54%
Number that met the criteria: 60 / 386
Area covered: National
Source: UK Parkinson's Audit


Recommendation: 1.4.3.3

If an ergot-derived dopamine agonist is used, the patient should have a minimum of renal function tests, erythrocyte sedimentation rate (ESR) and chest radiograph performed before starting treatment, and annually thereafter

What was measured: Patients on long-term ergot dopamine who were being monitored as per the guidelines
Data collection end: November 2011
60%
Area covered: National
Source: UK Parkinson's Audit

What was measured: Patients started on ergot dopamine in the last year who had undergone the recommended baseline tests
Data collection end: November 2011
0%
Number that met the criteria: / 9
Area covered: National
Source: UK Parkinson's Audit


Recommendation: 1.4.4.1

MAO-B inhibitors may be used as a symptomatic treatment for people with early PD

What was measured: Patients with a new (< 1 year) diagnosis of Parkinson’s who were on MAOB inhibitors prescribed by neurologists
Data collection end: November 2011
13.52%
Number that met the criteria: 38 / 281
Area covered: National
Source: UK Parkinson's Audit

What was measured: Patients with a new (< 1 year) diagnosis of Parkinson’s who were on MAOB inhibitors prescribed by elderly care physicians
Data collection end: November 2011
5.18%
Number that met the criteria: 20 / 386
Area covered: National
Source: UK Parkinson's Audit


Recommendation: 1.6.1.4

Clinicians should be aware of dopamine dysregulation syndrome, an uncommon disorder in which dopaminergic medication misuse is associated with abnormal behaviours, including hypersexuality, pathological gambling and stereotypic motor acts. This syndrome may be difficult to manage

What was measured: New patients who being monitored for impulsive / compulsive behaviour
Data collection end: November 2011
84.26%
Number that met the criteria: 182 / 216
Area covered: National
Source: UK Parkinson's Audit

What was measured: Existing patients who being monitored for impulsive / compulsive behaviour
Data collection end: November 2011
72.49%
Number that met the criteria: 880 / 1214
Area covered: National
Source: UK Parkinson's Audit

What was measured: Proportion of people with Parkinson's disease who are taking dopamine agonists, with evidence recorded that they are monitored for compulsive behaviours.
Data collection end: September 2015
77.5%
Area covered: National
Source: UK Parkinson's Audit


Recommendation: 1.8.2.4

People with PD who have sudden onset of sleep should be advised not to drive and to consider any occupational hazards. Attempts should be made to adjust their medication to reduce its occurrence

What was measured: Proportion of people with Parkinson's disease who are drivers, that had a documented discussion of the impact of known excessive daytime sleepiness on driving.
Data collection end: November 2011
80%
Data collection end: September 2015
56.5%
Area covered: National
Source: UK Parkinson's Audit


Recommendation: 1.9.1.1

People with PD should have regular access to the following: clinical monitoring and medication adjustment a continuing point of contact for support, including home visits, when appropriate a reliable source of information about clinical and social matters of concern to people with PD and their carers which may be provided by a Parkinson's disease nurse specialist.

What was measured: Proportion of people with Parkinson’s disease who have access to a Parkinson’s disease nurse specialist or other professional capable of providing: • Clinical monitoring and medication adjustment • A continuing point of contact for support, including home visits, when appropriate • A reliable source of information about clinical and social matters of concern to people with PD and their carers.
Data collection end: April 2009
92%
Number that met the criteria: 12 / 13
Data collection end: June 2011
100%
Number that met the criteria: 13 / 13
Area covered: Local
Source: Agha, R. et al (2012) Improving Compliance with NICE Guidelines on Parkinson's Disease: A Quality Improvement Study Annals of Medicine and Surgery


Recommendation: 1.9.2.1

Physiotherapy should be available for people with PD. Particular consideration should be given to: • gait re-education, improvement of balance and flexibility • enhancement of aerobic capacity • improvement of movement initiation • improvement of functional independence, including mobility and activities of daily living • provision of advice regarding safety in the home environment

What was measured: Services that have access to expert physiotherapy
Data collection end: November 2011
84%
Area covered: National
Source: UK Parkinson's Audit

What was measured: Proportion of people with Parkinson’s disease, where physiotherapy was available at diagnosis and each regular review, and appropriate referral is activated.
Data collection end: April 2009
23%
Number that met the criteria: 3 / 13
Data collection end: June 2011
100%
Number that met the criteria: 13 / 13
Area covered: Local
Source: Agha, R. et al (2012) Improving Compliance with NICE Guidelines on Parkinson's Disease: A Quality Improvement Study Annals of Medicine and Surgery

What was measured: Proportion of people with Parkinson's disease whose time between diagnosis and physiotherapy referral was less than 1 year.
Data collection end: September 2015
27%
Area covered: National
Source: UK Parkinson's Audit


Recommendation: 1.9.3.1

Occupational therapy should be available for people with PD. Particular consideration should be given to: • maintenance of work and family roles, home care and leisure activities • improvement and maintenance of transfers and mobility • improvement of personal self-care activities, such as eating, drinking, washing and dressing • environmental issues to improve safety and motor function • cognitive assessment and appropriate intervention.

What was measured: Occupational therapy services who saw patients within 18 weeks of referral
Data collection end: November 2011
93%
Area covered: National
Source: UK Parkinson's Audit

What was measured: Occupational therapists who thought referral was timely
Data collection end: November 2011
87.9%
Area covered: National
Source: UK Parkinson's Audit

What was measured: Services that have access to expert OT services
Data collection end: November 2011
72%
Area covered: National
Source: UK Parkinson's Audit

What was measured: Proportion of people with Parkinson’s disease, where occupational therapy was available at diagnosis and each regular review, and appropriate referral is activated.
Data collection end: April 2009
0%
Number that met the criteria: / 13
Data collection end: June 2011
100%
Number that met the criteria: 13 / 13
Area covered: Local
Source: Agha, R. et al (2012) Improving Compliance with NICE Guidelines on Parkinson's Disease: A Quality Improvement Study Annals of Medicine and Surgery

What was measured: Proportion of people with Parkinson's disease referred to occupational therapy at an appropriate time according to the occupational therapist.
Data collection end: September 2015
89.4%
Area covered: National
Source: UK Parkinson's Audit


Recommendation: 1.9.4.1

Speech and language therapy should be available for people with PD. Particular consideration should be given to: • improvement of vocal loudness and pitch range, including speech therapy programmes such as Lee Silverman Voice Treatment (LSVT) • teaching strategies to optimise speech intelligibility • ensuring an effective means of communication is maintained throughout the course of the disease, including use of assistive technologies • review and management to support safety and efficiency of swallowing and to minimise the risk of aspiration.

What was measured: Proportion of people with Parkinson's disease whose target time is met between referral and first speech and language therapy appointment.
Data collection end: November 2011
90%
Data collection end: September 2015
85.4%
Area covered: National
Source: UK Parkinson's Audit

What was measured: Proportion of SALT teams who saw PD patients who were PD specialists
Data collection end: November 2011
61%
Area covered: National
Source: UK Parkinson's Audit

What was measured: Proportion of people with Parkinson’s disease, where speech and language therapy was available at diagnosis and each regular review, and appropriate referral is activated.
Data collection end: April 2009
8%
Number that met the criteria: 1 / 13
Data collection end: June 2011
100%
Number that met the criteria: 13 / 13
Area covered: Local
Source: Agha, R. et al (2012) Improving Compliance with NICE Guidelines on Parkinson's Disease: A Quality Improvement Study Annals of Medicine and Surgery


Recommendation: 1.10.1.1

Palliative care requirements of people with PD should be considered throughout all phases of the disease

What was measured: Patients where a discussion was documented
Data collection end: November 2011
53.16%
Number that met the criteria: 42 / 79
Area covered: National
Source: UK Parkinson's Audit

What was measured: Patients who were provided with information about lasting power of attorney
Data collection end: November 2011
40.26%
Number that met the criteria: 31 / 77
Area covered: National
Source: UK Parkinson's Audit

What was measured: Patients who were provided with information about an end of life care plan
Data collection end: November 2011
39.24%
Number that met the criteria: 31 / 79
Area covered: National
Source: UK Parkinson's Audit

What was measured: The proportion of people with markers of advanced Parkinson's disease who had a documented discussion about end-of-life care issues/care plans.
Data collection end: September 2015
28%
Area covered: National
Source: UK Parkinson's Audit

What was measured: Evidence the patient or carer has been offered information about, or has set up, a lasting power of attorney or power of attorney in Scotland (where there are markers of advanced disease)
Data collection end: September 2015
26.3%
Area covered: National
Source: UK Parkinson's Audit


Recommendation: 1.10.1.2

People with PD and their carers should be given the opportunity to discuss end-of-life issues with appropriate healthcare professionals.

What was measured: Proportion of people with Parkinson’s disease who were given opportunities to discuss and ask questions about their palliative care requirements with appropriate healthcare professionals.
Data collection end: April 2009
0%
Number that met the criteria: / 13
Data collection end: June 2011
100%
Number that met the criteria: 13 / 13
Area covered: Local
Source: Agha, R. et al (2012) Improving Compliance with NICE Guidelines on Parkinson's Disease: A Quality Improvement Study Annals of Medicine and Surgery



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