Improving Conversations about Parkinson's Dementia.

BACKGROUND: People with Parkinson's disease (PD) have an increased risk of dementia, yet patients and clinicians frequently avoid talking about it due to associated stigma, and the perception that "nothing can be done about it". However, open conversations about PD dementia may allow people with the condition to access treatment and support, and may increase participation in research aimed at understanding PD dementia. OBJECTIVES: To co-produce information resources for patients and healthcare professionals to improve conversations about PD dementia. METHODS: We worked with people with PD, engagement experts, artists, and a PD charity to open up these conversations. 34 participants (16 PD; 6 PD dementia; 1 Parkinsonism, 11 caregivers) attended creative workshops to examine fears about PD dementia and develop information resources. 25 PD experts contributed to the resources. RESULTS: While most people with PD (70%) and caregivers (81%) shared worries about cognitive changes prior to the workshops, only 38% and 30%, respectively, had raised these concerns with a healthcare professional. 91% of people with PD and 73% of caregivers agreed that PD clinicians should ask about cognitive changes routinely through direct questions and perform cognitive tests at clinic appointments. We used insights from the creative workshops, and input from a network of PD experts to co-develop two open-access resources: one for people with PD and their families, and one for healthcare professionals. CONCLUSION: Using artistic and creative workshops, co-learning and striving for diverse voices, we co-produced relevant resources for a wider audience to improve conversations about PD dementia.

Addressing Comorbidities in People with Parkinson's Disease: Considerations From An Expert Panel.

In the UK, guidance exists to aid clinicians and patients deciding when treatment for Parkinson's disease (PD) should be initiated and which therapies to consider. National Institute for Health and Care Excellence (NICE) guidance recommends that before starting PD treatment clinicians should discuss the following: the patient's individual clinical circumstances; lifestyle; preferences; needs and goals; as well as the potential benefits and harms of the different drug classes. Individualization of medicines and management in PD significantly improves patients' outcomes and quality of life. This article aims to provide simple and practical guidance to help clinicians address common, but often overlooked, co-morbidities. A multi-disciplinary group of PD experts discussed areas where clinical care can be improved by addressing commonly found co-morbidities in people with Parkinson's (PwP) based on clinical experience and existing literature, in a roundtable meeting organized and funded by Bial Pharma UK Ltd. The experts identified four core areas (bone health, cardiovascular risk, anticholinergic burden, and sleep quality) that, if further standardized may improve treatment outcomes for PwP patients. Focusing on anticholinergic burden, cardiac risk, sleep, and bone health could offer a significant contribution to personalizing regimes for PwP and improving overall patient outcomes. Within this opinion-based paper, the experts offer a list of guiding factors to help practitioners in the management of PwP.

CBT for Generalized Anxiety Disorder in Parkinson's Disease: A Case Study.

OBJECTIVES: To examine the use of cognitive behavioral therapy (CBT) in a case of co-occurring generalized anxiety disorder (GAD) and Parkinson's disease (PD). METHODS: This case study refers to a male aged 75 years with a diagnosis of Idiopathic Parkinson's disease. It focuses on applying a CBT model to address the psychological difficulties with PD and GAD. RESULTS: This case study reveals key aspects in presentation, diagnosis, and psychological treatment between PD and GAD, and is one of few studies published in this area. CONCLUSIONS: Symptoms of anxiety in an older adult with PD decreased during a course of CBT. The implications of the treatment outcome of this study and further considerations of treatment plans for comorbid PD and anxiety have been discussed. CLINICAL IMPLICATIONS: Using CBT could positively impact non-motor symptoms of Parkinson's, such as sleep difficulties and speech impediments. Using CBT for the catastrophic thinking and worry content in GAD seems to act as a complementary therapy for psychological/non-motor symptoms of PD.

Feasibility of remote Memory Clinics using the plan, do, study, act (PDSA) cycle.

INTRODUCTION: A timely diagnosis of dementia is crucial for initiating and maintaining support for people living with dementia. The coronavirus disease (COVID) pandemic temporarily halted Memory Clinics, where this is organised, and rate of dementia diagnosis has fallen. Despite increasing use of alternatives to face-to-face (F2F) consultations in other departments, it is unclear whether this is feasible within the traditional Memory Clinic model. AIMS: The main aim of this service improvement project performed during the pandemic was to explore feasibility of telephone (TC) and videoconference (VC) Memory Clinic consultations. METHODS: Consecutive patients on the Memory Clinic waiting list were telephoned and offered an initial appointment by VC or TC. Data extracted included: age, internet-enabled device ownership, reason for and choice of Memory Clinic assessment. We noted Montreal Cognitive Assessment-Blind (TC) and Addenbrooke's Cognitive Examination-III (VC via Attend Anywhere) scores, and feasibility of consultation. RESULTS: Out of 100 patients, 12 had a home assessment, moved away, been hospitalised, or died. 45, 21 and 6 preferred F2F, VC and TC assessments respectively. 16 were not contactable and offered a F2F appointment. The main reason for preferring F2F was non-ownership, or inability to use an internet-enabled device (80%). VC and TC preference reasons were unwillingness to come to hospital (59%), and convenience (41%). Attendance rate was 100% for VC and TC, but 77% for F2F. Feasibility (successful consultations) was seen in 90% (VC) and 67% (TC) patients. CONCLUSION: For able and willing patients, remote Memory Consultations can be both feasible and beneficial. This has implications for future planning in dementia services.

Using telemedicine and wearable technology to establish a virtual clinic for people with Parkinson's disease.

BACKGROUND: To develop an effective, patient-centred and sustainable service, we set up a virtual clinic (VC) for patients with Parkinson's disease, combining phone consultations and reports from wearable technology. The Parkinson's Kinetigraph (PKG) is a wrist-worn device providing objective motor assessment, generating a report used by clinicians to optimise medication regimens. INTERVENTIONS: A pilot study of VC was designed using quality improvement methodology. For a VC appointment, patients were phoned by a clinician. After discussing symptoms and reviewing the PKG report, the clinician could decide on any medication changes or other interventions and relay this to the patient's general practitioner in a clinic letter. Patient feedback was gathered via questionnaires and data collected on the outcomes and timings of the consultations. RESULTS: Over 12 clinics, 61 patients had VC appointments. Of questionnaire respondents, 89% were satisfied with VC (n=41). At VC, the clinician was able to make a treatment decision comparable to a face-to-face clinic in 79% of cases (n=48). Reasons appointments were deemed unsuccessful included issues with the PKG, speech or hearing problems and complex phase of disease. VC appointments, including administration time, last on average 22 min. This compares to 20 min face-to-face appointments but these do not include administration time. CONCLUSIONS: We have demonstrated a safe and effective VC template. Most VC appointments are equivalent to face-to-face clinic in terms of treatment outcome. Success could be further improved by appropriate patient selection. Using VC is time saving and can result in releasing face-to-face appointment slots for those in urgent need or newly referred patients. Further cost analysis is required; the cost of the PKG alone is more expensive than a face-to-face appointment, but this does not take into account other value added, such as patient convenience and satisfaction, and reduced need for ambulance transport.

The burden of sialorrhoea in chronic neurological conditions: current treatment options and the role of incobotulinumtoxinA (Xeomin®).

Sialorrhoea is a frequent symptom of neurological diseases (e.g. Parkinson's disease, motor neuron disease, cerebral palsy, and stroke) and is defined as excessive saliva accumulation leading to unintentional loss of saliva from the mouth. Sialorrhoea increases the overall burden on the patient and their caregivers, the impact of which can be both physical and psychosocial. Treatments for sialorrhoea range from lifestyle and behavioural guidance, to medications, surgery or radiation. Nonpharmacological interventions include advice on posture, swallowing control, cough management, dietary changes, eating and drinking techniques, and behavioural modification; however, these conservative measures may be ineffective for people with progressive neurological conditions. The pharmacological treatment of sialorrhoea is challenging because medications licensed for this purpose are limited, but treatments can include anticholinergic drugs and botulinum toxins. Surgical treatment of sialorrhoea is typically reserved as a last resort for patients. IncobotulinumtoxinA (Xeomin®) is the first botulinum toxin type A to receive US and UK marketing authorization for the symptomatic treatment of chronic sialorrhoea due to neurological disorders in adults. In this review, we discuss and compare the frequency and method of administration, location of treatment delivery, approximate annual costs and main side effects of botulinum toxin and different anticholinergic drugs. Management of patients with chronic neurological conditions requires input from multiple specialist teams and thus a multidisciplinary team (MDT) approach is considered fundamental to ensure that care is consistent and tailored to patients' needs. To ensure that adult patients with neurological conditions receive the best care and sialorrhoea is well managed, we suggest a potential clinical care pathway for sialorrhoea with a MDT approach, which healthcare professionals could aspire to.

Cost-utility analysis of levodopa carbidopa intestinal gel (Duodopa) in the treatment of advanced Parkinson's disease in patients in Scotland and Wales.

AIMS: To carry out a cost-utility analysis comparing the cost-effectiveness of levodopa carbidopa intestinal gel (LCIG) with standard of care (SOC) in patients with advanced Parkinson's Disease (aPD) unsuitable for apomorphine or deep brain stimulation (DBS). LCIG is the only treatment option in this small, but clinically important, population. METHODS: A Markov model with 25 disease states based on disease stage and off-time status plus death. Patients enter the model with aPD spending >50% of their waking day in the off-state. Patients progress through the model in 6-monthly cycles for 20 years to approximate lifetime treatment and capture long-term costs and effects of therapy. Inputs are based on LCIG clinical trials for clinical outcomes and health state utilities, the literature for health state transitions and use UK-based input data wherever possible (drug costs, disease/adverse event management costs, discontinuation rates, mortality rates). LIMITATIONS: Data collection can be challenging in this small, elderly population with advanced disease, therefore some model inputs were estimated, rather than collected directly. It was assumed that a reduction in off-time was the only benefit after the first year of treatment with LCIG; this is a conservative approach, since there may be additional clinical benefits. RESULTS: There is a considerable incremental gain in quality adjusted life years (QALYs) for patients treated with LCIG of 1.26 QALY with an associated incremental cost-effectiveness ratio (ICER) of £52,110. If the impact on caregivers is included, the ICER reduces to £47,266. CONCLUSIONS: In cases where there is an orphan population, with no alternative treatment options, HTA assessments have a broader decision-making framework and the ICER is interpreted in this context. In the setting of a very small population, with considerable unmet need, LCIG represents value for money, as reflected by funding approval across the UK.

Noninvasive options for 'wearing-off' in Parkinson's disease: a clinical consensus from a panel of UK Parkinson's disease specialists.

In the past 4 years, two adjunctive treatment options to levodopa have been licensed for use in the UK in patients with Parkinson's disease (PD) and motor fluctuations: opicapone, a third-generation catechol-O-methyl transferase inhibitor, and safinamide, a monoamine oxidase B inhibitor. This clinical consensus outlines the practical considerations relating to motor fluctuations and managing wearing-off in patients with PD, and provides a clinical insight to adjunctive treatment options, including opicapone and safinamide. Practice-based opinion was provided from a multidisciplinary steering Group of eight UK-based movement disorder and PD specialists, including neurologists, geriatricians and a nurse specialist, from England, Scotland and Wales.