By Ailish Fountain, Parkinson’s Nurse Specialist, University Hospital South Manchester

Parkinson’s Advanced MasterClass 36A, November 2019

The Parkinson’s Kinetigraph Clinic (PKG) is a Specialist Nurse Led initiative. The referral criterion was expanded to incorporate other Parkinson’s services including Neurology, Care of the elderly Consultants and Parkinson’s Nurse Specialist in MFT; promoting equity for those patients not seen at Buccleuch Lodge Day Hospital. The provision of services at a specialist hub supports Greater Manchester health and Social Care partnership for Neuro rehabilitation.

Aims

Patient satisfaction
The outcomes of PKG in Care of the Elderly Day Hospital
The level of patient complexities using recognised scoring tools

Methods

Data collated for Rockwood frailty, Hoehn and Yahr and cognitive impairment were taken from clinic letters or self-reported.
52 patients completed a patient satisfaction questionnaire, incorporating usability, environment and outcomes.

Results

100% patients felt they received a professional service
23% felt the report did not meet their expectations.
A small percentage struggled with the device.
Rockwood frailty score showed 62% were vulnerable with 25.3% in the moderately to severely frail.
18.2% had a diagnosis of dementia
72,5% scored 3 or more on the Hoehn and Yahr.

Discussion

Patient Satisfaction.

  • Those patients who rated the usability of the device as neutral were not assessed at the time for MCI/ dementia or increased bradykinesia.
  • The data logger only records from 05:00- 22:00 therefore does not register symptoms of nocturnal akinesia.
  • It records for 6 days which is a “snapshot” of time for a person with a long term condition.
  • The device does not account for complex non motor symptoms.

Interventions.
The PKG allows clinicians increased certainty of medication response and motor fluctuations therefore multiple changes to medication regimes can be assuredly made with the need for fewer follow up clinics.

Patient complexities.
The PKG allowed for adjustments in medication for patients with Parkinson’s dementia where it may be difficult to assess through clinic consultation.

Anomalies.
The PKG has been used on several occasions over the last 4 years and this has allowed for repeated recordings for individual patients.
Apomorphine patients have been shown to have maintained a Bradykinesia score that is consistently within a few percent of the control group. Therefore graphically there would appear fewer motor symptoms but these patients diagnosed 15 years plus are now experiencing profound non motor complications.

A patient on Opicaopne shows peak dose dyskinesia following their dose an hour after their last daytime dose of levodopa, this also appears early morning with wearing off more evident later in the day. Timing of Opicapone may need reviewing on an individual basis.

The immobility summary is helpful in showing response to medication, but for some patients with moderate bradykinesia there “Off wrist” summary shows frequent periods of the watch not being worn when patients
confirm that it has been worn throughout. I would argue that this shows marked immobility.

Patient perception is always intriguing as some patients whose bradykinesia score is over 30 % feel that their Parkinson’s symptoms are well managed. As for those whose score is consistently in or near the control group feel their Parkinson’s symptoms impact on their quality of life.

Future Considerations

Virtual clinics- to reduce DNAs the watch can be set up and posted to those patients cognitively able to follow instructions or their carers.
To audit patients ( Hoehn and Yahr 3 and above or Rockwood frailty score of moderately severe) who have had 1 or more alterations to their medication regime. Firstly to identify if this reduced face to face follow up appointments over a 12 month period compared with previous 12 months.

Conclusion

A well received professional service, in which patients could participate in the management of their condition and receive personalised care that can predict symptoms and make preventative changes.
It increased the clinician’s confidence in making multiple changes to medications in a progressively frail Parkinson’s population.

Thanks to colleagues at Buccleuch Lodge Day Hospital and Complex health Directorate, for supporting this initiative.
Thanks to Manchester Foundation Charities Fund for their investment.