Movement disorders

Background:

Previous clinical trials assessing potential disease-modifying therapies (DMTs) for Parkinson’s disease (PD) have been hugely inefficient in terms of time and resources, resulting in >10 years for a single therapy to complete phase 3 assessment. Additionally, un-representative trial populations limit the generalisability of findings. Increased efficiency of clinical trial conduct has been successfully demonstrated in multi-arm, multi-stage (MAMS) trials, which assess multiple therapies in parallel and identify ineffective therapies at early-stage analyses. New arms can be added within existing trial infrastructure, providing opportunities to build on delivery frameworks and expertise. The Edmond J Safra Accelerating Clinical Trials in PD (EJS ACT-PD) initiative was set-up to address trial design inefficiencies and produce an inclusive protocol for a neuroprotective MAMS PD trial.

Methods:

Over 90 key stakeholders from across the UK, including people with PD and care partners form the EJS ACT-PD consortium. Six working groups have addressed trial design, outcome measures, therapy selection, infrastructure, funding and sustainability, and patient and public inclusion. Design decisions have been further informed by: a community advisory panel; an international advisory group; the MHRA; results of a UK-wide Site Capability Survey; a robust treatment selection process; statistical modelling; and literature reviews.

Results:

We have designed a phase 3 multi-centre, MAMS, randomised, double-blind, placebo-controlled trial to assess the clinical and cost effectiveness of potential DMTs in a representative PD population. The trial aims to recruit across 40 UK sites from December 2024. Wide-spread site inclusion and diverse recruitment will be supported by remote visit options; broad inclusion criteria; core-funded staff; and a tiered delivery approach based on site capabilities. The primary outcome of a patient-reported measure of PD impact will ensure meaningful results.

Conclusion:

MAMS trials offer exciting opportunities to accelerate the assessment of potential therapies whilst building on national infrastructure and encouraging diverse participant recruitment.

Parkinson's Disease (PD) is a progressive neurological disorder for which there is currently no cure.  Palliative care should be discussed as part of PD management, both to empower patient understanding and expectations of their condition and to avoid unnecessary hospital admissions

Results from the 2022 Parkinson’s UK national audit,  found that the elderly care PD service in York was underperforming in having advance care planning (ACP) discussions with PD patients. The aim of this quality improvement project is to further review ACP discussions on a larger sample size and improve practice in this area.

Our sample included 100 people with idiopathic PD within the Vale of York who had been seen by a PD specialist in the month of November. Clinic letters from all PD specialist involvement were read, alongside any letters from other specialities, discharge letters from hospital and general practice encounters to look for any documentation of ACP discussions.

Results showed that 82 patients had no documentation of any discussions on ACP. This population included patients in nursing homes, needing package of care, patients with Rockwood frailty scores >6 and patients showing signs of deterioration in their condition.

It is clear from the data that these discussions are not occurring as often as they should.  Simply doing this QIP has raised awareness within the team and anecdotally, improvement in performance has already been noted.  Further discussion and presentation of the QIP findings are to be presented at clinical governance meetings to provide further education.  Data will then be reaudited. 

Further change options following discussion and education could include clear documentation strategies for ACP helping to link between primary and secondary care. It should be noted that our service does not provide a Parkinson’s nurse who would often instigate ACP discussions.

Introduction
Non motor symptoms (NMS) management in Parkinson disease is crucial part of the comprehensive management and have significant impact on the care and the quality of life. However, there are limitations in assessing non motor symptoms given the complexity of the symptoms , time constraint in the clinic setting and major emphasis being the motor symptoms.

Objective
To improve the assessment of non-motor symptoms in movement disorder clinics for the comprehensive and personalised management of patients with Parkinson disease. Service Development PD non-motor symptoms Questionnaire was introduced to the movement disorder clinics. Patients attended were asked to fill the questions in advance just before the clinic time or the questions being sent out in the post alongside the clinic appointment letter.

Results
Data collected from the movement disorder clinics before and after the intervention. Twenty unselected patients from before the intervention and twenty after the intervention were reviewed. Data showed that non motor symptoms such as falls, urinary symptoms , sleep and memory were well acknowledged before the intervention. However , there is improvement in recognition of the other non-motor symptoms after the intervention although there is still room for improvement. Further plan 1. Continue encouragement of using the NMS questionnaire and recognising the non-motor symptoms and early intervention for the comprehensive, personalised management of patients with Parkinson disease and to improve the quality of life. 2. Liaison with the secretaries to send out the NMS questionnaires to follow up patients routinely with clinic appointment letters. 3. Aim to re audit in 6 months’ time. 4. Gather patient feedback on satisfaction of non-motor symptoms recognition and getting addressed with intervention.

Introduction

The UK Parkinson's Audit assesses whether patients with Parkinson's Disease (PD) are managed according to standards. Referring patients to physiotherapy (PT) and advising those with daytime sleepiness not to drive are two of these. In our clinic, patients identified as drivers are advised to inform the DVLA and will undergo a MOCA, sleep questionnaire and driving assessment. 

Project Aim

Are we making early physiotherapy referrals and documenting driving status in new diagnosed outpatients? 

Methods

Online notes of newly diagnosed patients over a 12 month period were reviewed. A clinic checklist was created and displayed in the clinic as a poster with the mnemonic:

Lasting Power of Attorney

Driving

Osteoporosis

Physiotherapy

Anticipatory Care Planning

Following introduction of the checklist a further cycle has taken place. 

Results

In the initial cycle, 34 newly diagnosed patients were identified. 4 were nursing home residents and excluded from results. Of the remaining, 83% had documentation of driving status. 2 patients were drivers and 1 had evidence of completed driving assessments. 20 patients were referred to physiotherapy and a further 3 were offered (76%). 50% of referrals were within the first month of diagnosis. Following checklist introduction, 21 new PD patients were identified over 6 months. The clinic team were sent updated data throughout to encourage ongoing improvements. 95% had documentation of driving status. 9 were drivers. 6 had full driving assessment completed. 16 (76%) patients were referred to physiotherapy. 75% of these were referred within the first month. 

Conclusions

Repeat data collection has shown improvement in both driving status documentation and early physiotherapy referral. The checklist reminds us of important aspects of outpatient care in PD that may otherwise get forgotten. Ongoing data collection will hopefully continue to improve. 

Background:

Patients not yet receiving medication provide insight to drug-naïve early physiology of Parkinson's Disease (PD). Decisions to start medication and assessment of response to its initiation can be challenging for physicians and patients alike.

Aim:

To identify objective, sensor-derived features of upper limb bradykinesia, postural stability, and gait that can inform decision-making in a movement disorder clinic. Methods: We used a single finger sensor to identify upper limb features and an array of six body-worn sensors to measure postural stability and gait. Patients were tested over nine visits, at three-monthly intervals, as part of a standard neurological examination.

Results:

Three upper limb bradykinetic features (finger tapping speed, pronation supination speed, and pronation supination amplitude) and three gait features (gait speed, arm range of motion, duration of stance phase) were found to progress in unmedicated early-stage PD patients. In all features, progression was masked after the start of medication.

Conclusion:

Commencing antiparkinsonian medication is known to lead to masking of progression signals in clinical measures in de novo PD patients. In this study, we show how this effect can be measured using digital devices. The testing kit can be used in movement disorder clinics to inform decision-making and progression monitoring in early PD.

Exercise is beneficial for Parkinson’s disease (PD), but many people struggle to achieve the 150 minutes per a week recommendation. Symptoms of PD or co-morbidity may be barriers for exercise; and physiotherapists can provide expert assessment and tailoring of exercise to accommodate these needs. We developed a remote physiotherapy intervention using videoconference (Attend Anywhere). An ongoing feasibility trial is assessing this intervention, and a process evaluation seeks to understand the broader context and acceptability of the intervention. Here we present a qualitative study of participants of the feasibility study. We invited participants from the feasibility trial to individual semi-structured telephone or videoconference interview. 14 participants were interviewed. Transcripts were analysed by thematic analysis within two main themes: physical activity and use of digital technology. Participants spoke about their attitudes towards their diagnosis. Individuals who had come to terms with their PD were more engaged with the exercise regime than participants who expressed a sense of denial. Participants who mentioned the benefits of exercise for reducing or delaying PD symptoms were more likely to report a positive attitude to exercise. In contrast, individuals with co-morbidity, or caring roles, found it more difficult to commit to regular exercise; flexibility of the exercise routine was valued. For the theme of digital technology some participants reported struggling with, technical problems such as interruptions in internet connection, having constrained space to exercise and staying in view of the camera for the physiotherapist. Whilst some participants lacked digital confidence, or expressed a preference for in-person treatment, other participants reported no difficulties or found it more convenient than travelling to clinic.

Introduction

Parkinson’s Disease (PD) is recognised by the motor symptoms of tremor, rigidity and bradykinesia. However, the prevalence of psychiatric symptoms such as low mood, anxiety and memory problems in PD is also common (20-80%). We integrated one clinical session per week from a Parkinson’s specialist psychiatrist (PDSP) into our existing MDT service, and aimed to evaluate the impact of this model on care for patients with PD.

Method

We initiated a series of Plan Do Study Act (PDSA) cycles to establish a referral pathway to our PDSP. Using electronic clinical records we collected data from a cohort of PD patients seen by our PDSP over 6 months to map symptoms, time to review, diagnosis, treatment and follow-up. We estimated the number of referrals to other services that did not need to be made over the same period due to access to our PDSP

Results

Fifty-one patients with PD were referred to our PDSP with the following symptom(s): memory impairment (53%), low mood (42%), hallucinations (10%), anxiety (8%) - all were seen within eight weeks. Of the 27 patients referred with memory impairment, review by our PDSP meant that 15 did not need onward referral to a separate mental health service. Of 14 patients with low mood (without memory impairment), review by our PDSP meant that 12 did not need onward referral.

Conclusion

Prior to the integration of a PDSP into our PD MDT patients with psychiatric symptoms needed to be referred to another clinical service, often with a long wait for assessment and treatment. With access to a PDSP, 51 patients were reviewed within eight weeks, and 27 did not need onward referral to another service. We do not yet have evidence as to how patient outcomes differ before and after integration of a PDSP into our team

Introduction:

Cognitive impairment and dementia are prevalent in Parkinson’s disease (PD) and significantly impact patients’ quality of life. Accurate prognostic indicators of cognitive decline in this population are needed. Electroencephalography (EEG), a non-invasive measure of brain activity, is one such measure. The current study aimed to systematically review which EEG indices are associated with mild cognitive impairment (PD-MCI) and dementia in PD (PDD).

Method:

A systematic literature search was conducted in Embase, MEDLINE, PsycINFO and Web of Science in November 2022 to identify studies using EEG to assess cognition in PD-MCI and PDD.

Results:

Of the 1716 studies retrieved, 30 were eligible for inclusion. Spectral power in delta, theta, alpha, beta and gamma bands was most frequently investigated (n=13), followed by functional connectivity (n=9) and event related potentials (ERPs; n=6). Slowing of spectral power, characterised by global increases in delta and theta bands with a concomitant decrease in alpha and beta bands, was found in PD-MCI and PDD (n=11). Reduced functional connectivity between anterior and posterior regions was also associated with cognitive impairment in PD (n=2), together with decreased functional connectivity in the alpha band (n=9) in PD-MCI and PDD. However, two studies displayed normal functional connectivity of delta sources in PD-MCI and PDD respectively. ERP studies revealed deficits in attention and semantic processing associated with PD-MCI/PDD.

Conclusions:

This review demonstrates that slowing of EEG activity, reduced functional connectivity and aberrant ERPs are associated with PD-MCI and PDD. Study limitations include small sample sizes and discrepancies in the criteria used to define PD-MCI, together with the wide variety of EEG tasks, montages and analysis pipelines used between sites. Overall, this study highlights the potential application of EEG to predict and monitor cognition in PD. Further work should be undertaken to determine the sensitivity, specificity and prognostic value of these EEG indices.

Introduction

The UK Parkinson's audit assesses whether patients with Parkinson's Disease (PD) are managed according to standards. Referring patients to physiotherapy (PT) and advising those with daytime sleepiness not to drive are two of these. In our clinic, patients identified as drivers are advised to inform the DVLA and will undergo a MOCA, sleep questionnaire and driving assessment. 

Project Aim

Are we making early physiotherapy referrals and documenting driving status in newly diagnosed outpatients? 

Methods

Online notes of newly diagnosed patients over a 12 month period were reviewed. A clinic checklist was created and displayed in the clinic as a poster with the mnemonic:

Lasting Power of attorney

Driving

Osteoporosis

Physiotherapy

Anticipatory care planning

Following introduction of the checklist a further cycle has taken place. 

Results

In the initial cycle, 34 newly diagnosed patients were identified. 4 were nursing home residents and excluded from results. Of those remaining, 83% had documentation of driving status. 2 patients were drivers and one had evidence of completed driving assessments. 20 patients were referred to physiotherapy and a further 3 patients were offered (76%). 50% of referrals were within the first month of diagnosis. Following checklist introduction, 21 new PD patients were identified over 6 months. The clinic team were sent updated data throughout to encourage ongoing improvements. 95% had documentation of driving status. 9 were drivers. 6 had full driving assessment completed. 16 (76%) patients were referred to physiotherapy. 75% of these were referred within the first month.

Conclusions

Repeat data collection has shown improvement in both driving status documentation and early physiotherapy referral. The checklist reminds us of important aspects of outpatient care in PD that may otherwise get forgotten. Ongoing data collection will hopefully continue to improve. 

Introduction

People with Parkinson’s disease (PwP) are more likely to be admitted to hospital and have longer lengths of stay than those without Parkinson’s disease (PD). Parkinson’s UK and NICE have proposed standards of care for inpatients with PD, including that PD specialists are alerted when PwP are admitted to hospital. 66% of UK hospitals don’t have an alert system in place, including King’s Mill Hospital (KMH).

Audit

Over a 6 month period, referrals to the PD service in KMH were audited. 128 referrals were made; 5 per week on average. Hospital-wide, around 12 PwP are admitted weekly. Therefore under 50% are referred for specialist input. 64% of patients had been in hospital over 24 hours before referral. 16 patients were referred to the PD service more than once during admission, reflecting ongoing management difficulties.

Intervention

The digital transformation team completed software changes to create an electronic alert when PwP are admitted to hospital. The local system for recording admission details and electronic prescribing, NerveCentre, can now generate an electronic list showing all inpatient PwP. A multi-disciplinary virtual PD ward round was introduced. Using NerveCentre, all PwP can be remotely reviewed and triaged. Proactive, positive interventions from the specialist PD team include: constipation management, osteoporosis screening, speech and language therapist review, cognitive assessment, issuing dysphagia cards, and advance care planning. NerveCentre enables remote medication reviews and audit of prescribing, ensuring that any breaches of the ‘Get It On Time’ campaign are reported via Datix, with relevant learning shared. The virtual ward round provides training opportunities for specialist registrars, junior doctors, and newly appointed PD specialist nurses.

Conclusion

The electronic flag permits more comprehensive, proactive and timely inpatient reviews of PwP. The interventions from this project enable the Trust to meet Parkinson’s UK recommendations and hopefully improves the inpatient experience of PwP.