Parkinson’s disease in Angus: a primary care questionnaire
The aim of this project was to gather information regarding the number of patients with PD, the potential difficulties in diagnosis and management, and contact achieved for these patients with members of the primary health care team (re. further development of the new Angus PD Clinic). Based on the population in Angus we estimate that there are about 434 people with PD.
A questionnaire survey was sent to all GPs asking about the size of the problem, diagnosis, maintenance, complex and palliative phase PD.
45% of practices responded (9/20), and 41% of GPs (36/88) with a total number of 130 PD patients (range 2–40). GPs told us they saw <1 new PD patients per month (7/9). Patients demographics were: male = 53.5% (20-100%), female = 46.5% (30-70%), >65 years old = 88.2% (50-100%), < 65 years old = 11.8% (13-50%).
No GP stated that PD diagnosis is “straightforward”
- Initiation of Levodopa in 80% of “suspected” PD patients (range 50-100%) in 7/9 practices
- Agonist treatment (Pergolide) initiated in 23.3% of “suspected” PD patients (range 10-40%) in 3/9 practices
- Referral rate to Secondary Care = 63.9% (range 50-100%) in 7/9 practices
- ALL practices would refer to a local PD Clinic (if available) PRIOR TO INITIATING THERAPY
Principal “benefits” seen from a local PD clinic:
- Confirmation of diagnosis
- Advice on drug treatment
- Access to AHP/PAMS input
Reasons for non-referral to secondary care:
- “mild, early disease”
- “frail, elderly, already in care”
- “a positive response to Levodopa”
- “symptoms not a major handicap”
- “adoption of a wait-and-see policy”
- Routine PD patient review carried out in 7/9 practices (GP 5, DN 2) at a frequency of every 7.43 months (mean) – (range 2 months to 12 months)
- PDNS: 8/9 practices felt such a post would be of +ve benefit to their PD patients:
- Effective “link” between home/hospital
- Provision of specialist advice/expertise
- More time for the patient (and family)
- Educational role
- 44.4 % (4/9 practices) cared for such patients
- All were considered “patients’ needs to be unmet” – (lack of time/ resources/ staff/ AHP input)
- Mx of SWALLOW problems in PD patients – SALT referral (6), ENT referral (1), PD Clinic referral (1) and Pharmacist advice re. change to medication to liquid form (1)
- Experience of use of APOMORPHINE? – 11.1% (1/9 practices)
- 66.6% (6/9 practices) had experience of caring for PD patients in this phase of their illness
- Stated “means of management” in palliative PD:
- Increased home support (health and social service) … 40%
- Respite admission (to a Care Home) … 30%
- Increased input from carer(s) … 20%
- Admission to community hospital … 10%
The precise number of PD cases in Angus not known, but it is likely high given the population numbers aged > 65 years. There is a high rate of Levodopa initiation in Primary Care despite the stated common “diagnostic difficulty” of PD. The local clinic is supported and likely to be used for PD diagnostic confirmation (pre-initiation of treatment). Regular review of PD patients in primary care in Angus (mean 7 months) is already in place, however there may be case for a “Shared Care” type approach (with local PD Clinic). There is support for a PDNS in Angus (to provide advice, support, and education in complex disease; training in use of apomorphine).
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Parkinson's Academy, our original and longest running Academy, houses 20 years of inspirational projects, resources, and evidence for improving outcomes for people with Parkinson's. Led by co-founder and educational director Dr Peter Fletcher, the Academy has a truly collegiate feel and prides itself on delivering 'the things you can't get from books' - a practical learning model which inspires all Neurology Academy courses.