Exploring the experiences, priorities and preferences of people living with Parkinson's on exercise and physical activity promotion in the UK.

BACKGROUND: People with Parkinson's (PwP) want access to timely, relevant, and specific exercise and physical activity (PA) information to enable them to manage their symptoms and maintain wellbeing and quality of life. Research that promotes exercise in this population group is limited. Little is also known about the clinical practice around PA promotion in this population, especially around the time of diagnosis. OBJECTIVE: To explore the experiences, preferences, and priorities of PwP around exercise and PA promotion and assess their knowledge on these topics. METHODS: A cross-sectional online survey for PwP in the United Kingdom was conducted from July to December 2021. RESULTS: 430 participants started the survey and 405 completed it. Participants had a mean age of 65.1 (±9.2) and had been living with Parkinson's for a varying time (up to 2 years = 38%, up to 6 years = 39% and for 7 or more years = 23%). Most participants reported they had not received an education (68%; n = 276) or exercise intervention (54%; n = 217) as part of their routine management by the National Health Service (NHS) since diagnosis and had sought services privately. Knowledge of the overall benefits of exercise was good, however participants lacked specific knowledge on the impact of Parkinson's Disease (PD) on posture, falls and muscle strength. 90% of participants reported they would participate in an exercise and PA education interventions. CONCLUSIONS: PwP want exercise and PA education interventions that provide knowledge, skills and access to opportunities that enable participation. For the majority, these interventions have not been provided as part of their routine care pathway. To align with the priorities and preferences of PwP, interventions should be offered around the time of diagnosis, include content that is relevant and specific to how exercise and PA can mitigate symptoms of PD and should be delivered in person or online in a group setting.

Exploring the lived experiences of individuals with Parkinson's disease and their relatives: insights into care provision experiences, disease management support, self-management strategies, and future needs in Germany (qualitative study).

BACKGROUND: Parkinson's disease (PD) significantly impacts the health-related quality of life of affected individuals and their relatives. In order to support the affected individuals and their families in coping with PD, it is essential to offer comprehensive information about their experiences. A comprehensive understanding of their lived experiences with the disease, the healthcare system, applied self-management strategies and their needs is considered crucial for developing a PD support program. Therefore, we aimed to explore the lived experiences and support needs of individuals with PD and their relatives in Germany. METHODS: This non-interventional, qualitative study conducted an explorative status quo and needs assessment. It generated knowledge through semi-structured focus groups and interviews with individuals with PD at various disease stages and their relatives. The interviews were digitally recorded, transcribed verbatim, and analysed using content analysis. RESULTS: Fifty-two individuals with PD and 29 relatives participated in eight focus groups and 13 paired and 13 individual interviews. Four themes with corresponding subthemes emerged: (1) experiences, revealing individuals' experiences around their diagnosis and with disease-specific care provision; (2) management support offers, clarifying who provides support and the type of support offered; (3) self-management, including comprehensibility, meaningfulness and manageability; and (4) future needs, differentiating between deficits and needs. Most participants expressed a sense of abandonment when obtaining self-management strategies and mastering their lives with PD, often referred to as 'life 2.0'. They identified the lack of structured and adequate provision of information, system orientation and social awareness. CONCLUSIONS: In Germany, there is an urgent need for a comprehensive PD care program that addresses the needs of individuals with PD and their relatives from the start of their care trajectory. It could assist individuals in gaining a comprehensive understanding of the disease, obtaining self-management strategies, building a support network, and becoming experts in self-managing their disease. Moreover, it may positively influence their care trajectory and reduce burdens, such as overburdening, fear of progression, and health anxiety. TRIAL REGISTRATION: German Clinical Studies Register ( https://www.drks.de/DRKS00030090 , No. DRKS00030090, Date of registration: 15.12.2022).

Assessment of noninvasive brain stimulation interventions in Parkinson's disease: a systematic review and network meta-analysis.

A network meta-analysis of randomized controlled trials was conducted to compare and rank the effectiveness of various noninvasive brain stimulation (NIBS) for Parkinson's disease (PD). We searched PubMed, Web of Science, Cochrane Library, Embase, China National Knowledge Infrastructure (CNKI), Wanfang Database, China Science and Technology Journal Database (VIP), and Chinese Biomedical Literature Service System (SinoMed) databases from the date of database inception to April 30th, 2024. Two researchers independently screened studies of NIBS treatment in patients with PD based on inclusion and exclusion criteria. Two researchers independently performed data extraction of the included studies using an Excel spreadsheet and assessed the quality of the literature according to the Cochrane Risk of Bias Assessment Tool (RoB2). Network meta-analysis was performed in StataMP 17.0. A total of 28 studies involving 1628 PD patients were included. The results showed that HF-rTMS over the SMA (SMD = - 2.01; 95% CI [- 2.87, - 1.15]), HF-rTMS over the M1 and DLPFC (SMD = - 1.80; 95% CI [- 2.90, - 0.70]), HF-rTMS over the M1 (SMD = - 1.10; 95% CI [- 1.55, - 0.65]), a-tDCS over the DLPFC (SMD = - 1.08; 95% CI [- 1.90, - 0.27]), HF-rTMS over the M1 and PFC (SMD = - 0.92; 95% CI [- 1.71, - 0.14]), LF-rTMS over the M1 (SMD = - 0.72; 95% CI [- 1.17, - 0.28]), and HF-rTMS over the DLPFC (SMD = - 0.70; 95% CI [- 1.21, - 0.19]) were significantly improved motor function compared with sham stimulation. The SUCRA three highest ranked were HF-rTMS over the SMA (95.1%), HF-rTMS over the M1 and DLPFC (89.6%), and HF-rTMS over the M1 (73.0%). In terms of enhanced cognitive function, HF-rTMS over the DLPFC (SMD = 0.80; 95% CI [0.03,1.56]) was significantly better than sham stimulation. The SUCRA three most highly ranked were a-tDCS over the M1 (69.8%), c-tDCS over the DLPFC (66.9%), and iTBS over the DLPFC (65.3%). HF-rTMS over the M1 (SMD = - 1.43; 95% CI [- 2.26, - 0.61]) and HF-rTMS over the DLPFC (SMD = - 0.79; 95% CI [- 1.45, - 0.12)]) significantly improved depression. The SUCRA three highest ranked were HF-rTMS over the M1 (94.1%), LF-rTMS over the M1 (71.8%), and HF-rTMS over the DLPFC (69.0%). HF-rTMS over the SMA may be the best option for improving motor symptoms in PD patients. a-tDCS and HF-rTMS over the M1 may be the NIBS with the most significant effects on cognition and depression, separately.Trial registration: International Prospective Register of Systematic Review, PROSPERO (CRD42023456088).

Health Care Needs of Individuals with Parkinson's Disease Living in Eastern North Carolina: Insights for Multidisciplinary Care and Telemedicine.

Parkinson's disease (PD) is a complex condition, and individuals living in rural areas often face challenges accessing the specialized care they require. To better understand the specific healthcare needs of individuals with PD in Eastern North Carolina (ENC), the present study investigated three key areas: access to a multidisciplinary care team, access to PD-specific resources, and access to resources for establishing telemedicine services. Participants were recruited through email invitations to Parkinson's Foundation members and the distribution of postcards in the region, and 106 individuals with PD in ENC completed the online survey. Only 28.3% of respondents reported access to an interdisciplinary care team, with approximately 50% stating that their healthcare provider had not informed them of the availability of such a team. Nevertheless, the quality of care received was generally perceived as high, and 41.5% of participants were part of a PD support group. Approximately half of the respondents expressed a willingness to have telemedicine appointments with a movement disorder specialist. These findings offer valuable insights for healthcare providers and policymakers in rural areas to better understand the needs of people with PD. Several strategies, including community building and increased access to telemedicine, are recommended to address these needs.

Risk factors and intervention of caregiver burden in Parkinson's disease: a systematic review and meta-analysis.

PURPOSE: This study summarized characteristics and risk factors of caregiver burden in PD patients and used meta-analysis to verify the effectiveness of the intervention on caregiver burden. METHODS: Systematic review and meta-analysis were conducted. RESULTS: Forty-nine articles that involved 5387 caregivers of patients with PD were included in this study. Results of systematic review indicated that Zarit burden Inventory (ZBI) was the most used scale to measure the caregiver burden. All scales revealed caregivers of PD patients had mild to moderate caregiver burden. For the PD patients with longer disease duration, severer disease severity, more negative emotion and cognition impairment, their caregivers intended to have higher caregiver burden. The caregiver with negative emotion and who spent more time on caregiving indicated higher caregiver burden than the others. The caregiver burden was not improved after deep brain stimulation (DBS). Meta-analysis showed that cognitive behavior therapy and palliative care had no significant effect to reduce caregiver burden in PD patients' caregiver. CONCLUSION: Caregivers of PD patients experienced mild to moderate caregiver burden. Demographic factor, diseased-related factor and negative emotional factor were the risk factors of caregiver burden. Health education and care support for long-term management after DBS surgery should be provided for patients and caregivers to decrease caregiver burden.

Care of Late-Stage Parkinsonism: Resource Utilization of the Disease in Five European Countries.

BACKGROUND: Parkinson's disease (PD) is a neurodegenerative disease that leads to progressive disability. Cost studies have mainly explored the early stages of the disease, whereas late-stage patients are underrepresented. OBJECTIVE: The aim is to evaluate the resource utilization and costs of PD management in people with late-stage disease. METHODS: The Care of Late-Stage Parkinsonism (CLaSP) study collected economic data from patients with late-stage PD and their caregivers in five European countries (France, Germany, the Netherlands, UK, Sweden) in a range of different settings. Patients were eligible to be included if they were in Hoehn and Yahr stage >3 in the on state or Schwab and England stage at 50% or less. In total, 592 patients met the inclusion criteria and provided information on their resource utilization. Costs were calculated from a societal perspective for a 3-month period. A least absolute shrinkage and selection operator approach was utilized to identify the most influential independent variables for explaining and predicting costs. RESULTS: During the 3-month period, the costs were €20,573 (France), €19,959 (Germany), €18,319 (the Netherlands), €25,649 (Sweden), and €12,156 (UK). The main contributors across sites were formal care, hospitalization, and informal care. Gender, age, duration of the disease, Unified Parkinson's Disease Rating Scale 2, the EQ-5D-3L, and the Schwab and England Scale were identified as predictors of costs. CONCLUSION: Costs in this cohort of individuals with late-stage PD were substantially higher compared to previously published data on individuals living in earlier stages of the disease. Resource utilization in the individual sites differed in part considerably among these three parameters mentioned. © 2024 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.

The missing piece of the puzzle - The key role of the dietitian in the management of Parkinson's disease.

The current paradigm for the multidisciplinary management of Parkinson's Disease (PD) does not include regular nutritional assessment despite research showing that 90 % of people living with Parkinson's (PwP) lack access to basic dietetic services. Since many non-motor symptoms such as dysphagia, constipation and orthostatic hypotension and PD complications such as weight loss and sarcopenia can be improved through dietary intervention, dietitians are a critical missing piece of the PD management puzzle. This paper serves to review the role of dietitians and medical nutrition therapy in management of PD as well as a call to action for future studies to investigate improvement of nutritional status and quality of life for all PwP.

Disparities in the treatment of movement disorders using deep brain stimulation.

OBJECTIVE: Deep brain stimulation (DBS) is a well-established treatment for Parkinson's disease (PD) and essential tremor (ET). Although the prevalence of PD and ET can vary by sex and race, little is known about the accessibility of neurosurgical treatments for these conditions. In this nationwide study, the authors aimed to characterize trends in the use of DBS for the treatment of PD and ET and to identify disparities in the neurosurgical treatment of these diseases based on ethnic, racial, sex, insurance, income, hospital, and geographic factors. METHODS: Using the dates January 1, 2012, to December 31, 2019, the authors queried the National Inpatient Sample database for all discharges with an ICD-9 or ICD-10 diagnosis of PD or ET. Among these discharges, the DBS rates were reported for each subgroup of race, ethnicity, and sex. To develop national estimates, all analyses were weighted. RESULTS: Among 2,517,639 discharges with PD, 29,820 (1.2%) received DBS, and among 652,935 discharges with ET, 11,885 (1.8%) received DBS. Amid the PD cases, Black patients (n = 405 [0.2%], OR 0.16, 95% CI 0.12-0.20) were less likely than White patients (n = 23,975 [1.2%]) to receive DBS treatment, as were Hispanic patients (n = 1965 [1.1%], OR 0.76, 95% CI 0.65-0.88), whereas Asian/Pacific Islander patients (n = 855 [1.5%]) did not statistically differ from White patients. Amid the ET cases, Black (n = 230 [0.8%], OR 0.39, 95% CI 0.27-0.56), Hispanic (n = 215 [1.0%], OR 0.39, 95% CI 0.28-0.55), and Asian/Pacific Islander (n = 55 [1.0%], OR 0.51, 95% CI 0.28-0.93) patients were less likely than White patients (n = 10,440 [1.9%]) to receive DBS. Females were less likely than males to receive DBS for PD (OR 0.69, p < 0.0001) or ET (OR 0.70, p < 0.0001). CONCLUSIONS: The authors describe significant racial and sex-based differences in the utilization of DBS for the treatment of PD and ET. Further research is required to ascertain the causes of these disparities, as well as any differences in access to specialty neurosurgical care and referral for neuromodulation approaches.

Racial disparities in hospitalization characteristics among Native Hawaiians, Pacific Islanders and Asian American subgroups with Parkinson's disease.

BACKGROUND: Differences among Native Hawaiians/Pacific Islanders (NHPI) and Asian American (AA) subgroups have not been adequately studied in Parkinson's disease (PD). OBJECTIVE: To determine differences in demographics, comorbidities, and healthcare utilization among NHPI, AA subgroups, and White hospitalized PD patients. METHODS: We conducted a retrospective cross-sectional analysis of Hawai'is statewide registry (2016-2020). Patients with PD were identified using ICD10 code G20 and categorized as White, Japanese, Filipino, Chinese, NHPI, or Other. Variables collected included: age, sex, residence (county), primary source of payment, discharge status, length of stay, in-hospital expiration, Charlson Comorbidity Index (CCI) and Deep Brain Stimulation (DBS) utilization. Bivariate analyses were performed: differences in age and CCI were further examined by multivariable linear regression and proportional odds models. RESULTS: Of 229,238 hospitalizations, 2428 had PD (Japanese: 31.3 %, White: 30.4 %, Filipino: 11.3 %, NHPI: 9.6 %, Chinese: 8.0 %). NHPI were younger compared to rest of the subgroups [estimate in years (95 % CI): Whites: 4.4 (3.0-5.8), Filipinos: 4.3 (2.7-5.9), Japanese: 7.7 (6.4-9.1), Chinese: 7.9 (6.1-9.7), p < 0.001)]. NHPI had a higher CCI compared to White, Japanese, and Chinese (p < 0.001). Among AA subgroups, Filipinos were younger and had a higher CCI compared to Japanese and Chinese (p < 0.001). There were no significant differences in DBS utilization among subgroups. CONCLUSIONS: NHPI and Filipinos with PD were hospitalized at a younger age and had a greater comorbidity burden compared to other AAs and Whites. Further research, ideally prospective studies, are needed to understand these racial disparities.

Double dissociation of dopamine and subthalamic nucleus stimulation on effortful cost/benefit decision making.

Deep brain stimulation (DBS) and dopaminergic therapy (DA) are common interventions for Parkinson's disease (PD). Both treatments typically improve patient outcomes, and both can have adverse side effects on decision making (e.g., impulsivity).1,2 Nevertheless, they are thought to act via different mechanisms within basal ganglia circuits.3 Here, we developed and formally evaluated their dissociable predictions within a single cost/benefit effort-based decision-making task. In the same patients, we manipulated DA medication status and subthalamic nucleus (STN) DBS status within and across sessions. Using a series of descriptive and computational modeling analyses of participant choices and their dynamics, we confirm a double dissociation: DA medication asymmetrically altered participants' sensitivities to benefits vs. effort costs of alternative choices (boosting the sensitivity to benefits while simultaneously lowering sensitivity to costs); whereas STN DBS lowered the decision threshold of such choices. To our knowledge, this is the first study to show, using a common modeling framework, a dissociation of DA and DBS within the same participants. As such, this work offers a comprehensive account for how different mechanisms impact decision making, and how impulsive behavior (present in DA-treated patients with PD and DBS patients) may emerge from separate physiological mechanisms.

Real-World Evaluation of the Feasibility, Acceptability and Safety of a Remote, Self-Management Parkinson's Disease Care Pathway: A Healthcare Improvement Initiative.

BACKGROUND: There is significant unmet need for effective and efficiently delivered care for people with Parkinson's disease (PwP). We undertook a service improvement initiative to co-develop and implement a new care pathway, Home Based Care (HBC), based on supported self-management, remote monitoring and the ability to trigger a healthcare contact when needed. OBJECTIVE: To evaluate feasibility, acceptability and safety of Home Based Care. METHODS: We evaluated data from the first 100 patients on HBC for 6 months. Patient monitoring, performed at baseline and 6-monthly, comprised motor (MDS-UPDRS II and accelerometer), non-motor (NMSQ, PDSS-2, HADS) and quality of life (PDQ) measures. Care quality was audited against Parkinson's UK national audit standards. Process measures captured feasibility. Acceptability was assessed using a mixed-methods approach comprising questionnaires and semi-structured interviews. RESULTS: Between October 2019 and January 2021, 108 PwP were enrolled onto HBC, with data from 100 being available at 6 months. Over 90% of all questionnaires were returned, 97% were complete or had < 3 missing items. Reporting and communications occurred within agreed timeframes. Compared with baseline, after 6m on HBC, PD symptoms were stable; more PwP felt listened to (90% vs. 79%) and able to seek help (79% vs. 68%). HBC met 93% of national audit criteria. Key themes from the interviews included autonomy and empowerment. CONCLUSIONS: We have demonstrated acceptability, feasibility and safety of our novel remotely delivered Parkinson's care pathway. Ensuring scalability will widen its reach and realize its benefits for underserved communities, enabling formal comparisons with standard care and cost-effectiveness evaluation.

Preclinical and dose-ranging assessment of hESC-derived dopaminergic progenitors for a clinical trial on Parkinson's disease.

Human embryonic stem cell (hESC)-derived midbrain dopaminergic (mDA) cell transplantation is a promising therapeutic strategy for Parkinson's disease (PD). Here, we present the derivation of high-purity mDA progenitors from clinical-grade hESCs on a large scale under rigorous good manufacturing practice (GMP) conditions. We also assessed the toxicity, biodistribution, and tumorigenicity of these cells in immunodeficient rats in good laboratory practice (GLP)-compliant facilities. Various doses of mDA progenitors were transplanted into hemi-parkinsonian rats, and a significant dose-dependent behavioral improvement was observed with a minimal effective dose range of 5,000-10,000 mDA progenitor cells. These results provided insights into determining a low cell dosage (3.15 million cells) for human clinical trials. Based on these results, approval for a phase 1/2a clinical trial for PD cell therapy was obtained from the Ministry of Food and Drug Safety in Korea, and a clinical trial for treating patients with PD has commenced.

Impact of caregiver relationship on self-care in patients with Parkinson's disease: A cross-sectional study using Riegel's theory of self-care of chronic illness.

AIMS: To explore how the characteristics of patients and caregivers affect self-care in patients with Parkinson's disease (PD). DESIGN: A multicentre cross-sectional study. METHOD: We followed the STROBE checklist. Parkinson's disease patients aged 50 years and older and their caregivers were recruited from two tertiary hospitals and the Korean Parkinson's Disease Association website. Patient characteristics, including social support, relationship quality with caregivers, self-care efficacy and self-care, were analysed. Caregiver characteristics were also evaluated, including caregiving duration, social support, relationship quality with patients, contribution to patients' self-care efficacy and contribution to patients' self-care. RESULTS: The characteristics of patients and caregivers (103 pairs) were hierarchically regressed into patient self-care domains (maintenance, monitoring and management). Most patients and caregivers gave a self-care efficacy and self-care management rating of moderate. In three regression models, patient self-care efficacy was positively related to three domains of patient self-care. Self-care maintenance decreased as patients' disease duration increased. Self-care monitoring was positively related to the education level of patients and caregiving duration. Self-care management showed an inverse relationship with caregiving duration and a positive relationship with caregiver contribution. CONCLUSION: Self-care efficacy was important in promoting PD patients' self-care maintenance, monitoring and management. The contributions of caregivers were also critical in increasing PD patients' self-care management. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: To increase patients' self-care efficacy and self-care, educational interventions containing information about the disease, symptom management, and problem-solving should be implemented. Since caregivers are deeply involved in patients' self-care, educational interventions for caregivers should also be provided. IMPACT: This study closed the literature gap by examining the self-care efficacy and self-care of Korean PD patients. Findings demonstrated the importance of caregiver roles on patients' self-care and health. PATIENT OR PUBLIC CONTRIBUTION: Two tertiary hospitals and the Korean Parkinson's Disease Association assisted during the recruitment process.

Economic Evaluations Comparing Deep Brain Stimulation to Best Medical Therapy for Movement Disorders: A Meta-Analysis.

BACKGROUND: Movement disorders (Parkinson's disease, essential tremor, primary dystonia) are a debilitating group of conditions that are progressive in nature. The mainstay of treatment is best medical therapy; however, a number of surgical therapies are available, including deep brain stimulation. Economic evaluations are an important aspect of evidence to inform decision makers regarding funding allocated to these therapies. OBJECTIVE: This systematic review and meta-analysis evaluated the cost effectiveness of including deep brain stimulation compared with best medical therapy for movement disorder indications in the adult population. METHODS: Ovid Medical Literature Analysis and Retrieval System Online, Embase, and Cochrane Central Register of Controlled Trials were queried. Only economic evaluations reporting incremental cost-effectiveness ratios for including deep brain stimulation versus best medical therapy for movement disorders were included. Studies were reviewed in duplicate for inclusion and data abstraction. Data were harmonized using the Consumer Price Index and Purchasing Power Parity to standardize values to 2022 US dollars. For inclusion in meta-analyses, studies were required to have sufficient data available to calculate an estimate of the incremental net benefit. Meta-analyses of pooled incremental net benefit based on the time horizon were performed. The study was registered at PROSPERO (CRD42022335436). RESULTS: There were 2190 studies reviewed, with 14 economic evaluations included following a title/abstract and full-text review. Only studies considering Parkinson's disease were available for the meta-analysis. Quality of the identified studies was low, with moderate transferability to the American Healthcare System, and certainty of evidence was low. However, studies with a longer time horizon (15 years to lifetime) were found to have significant positive incremental net benefit (indicating cost effectiveness) for including deep brain stimulation with a mean difference of US$40,504.81 (95% confidence interval 2422.42-78,587.19). CONCLUSIONS: Deep brain stimulation was cost effective for Parkinson's disease when considered over the course of the patient's remaining life after implantation. TRIAL REGISTRATION: Clinical Trial Registration: PROSPERO (CRD42022335436).

[Occupational performance skills in Parkinson's disease: relationship with health-related quality of life and caregiver burden. Letter]. / Habilidades de desempeño ocupacional en la enfermedad de Parkinson: relación con la calidad de vida relacionada con la salud y la carga del cuidador. Carta.

TITLE: Habilidades de desempeño ocupacional en la enfermedad de Parkinson: relación con la calidad de vida relacionada con la salud y la carga del cuidador. Carta.

Clinical and cost-effectiveness of 'Live Well with Parkinson's' self-management intervention versus treatment as usual for improving quality of life for people with Parkinson's: study protocol for a randomised controlled trial.

BACKGROUND: The Live Well with Parkinson's Self-Management Toolkit is designed for use in the NHS to support people with Parkinson's, their carers and health professionals in managing motor and non-motor symptoms and promoting well-being. The Toolkit was developed based on theory-based behaviour change and self-management techniques in consultation with people living with Parkinson's and health and social care practitioners. There are digital (e-Toolkit) and paper (manual) versions. METHODS: Single-blind two-arm randomised controlled trial RCT of clinical effectiveness and cost-effectiveness of the Toolkit, facilitated by up to six sessions with a trained non-specialist supporter, in improving quality of life. People with Parkinson's will be assessed at baseline, 6 and 12 months. Assessors will be blind to the treatment group. The primary outcome measure is the Parkinson's Disease Questionnaire (PDQ-39, Parkinson's related quality of life) score at 12 months. Secondary outcome measures include the MDS Unified Parkinson's Disease Rating Scale (Part I, II, III, IV), EQ-5D, and a Client Service Receipt Inventory shortened, adapted for Parkinson's. Carer outcomes include the Zarit Carer Burden Inventory and Carer Quality of Life Questionnaire for Parkinsonism. A total of 338 people with Parkinson's, and their carers if appropriate, will be recruited from diverse settings across England. Those with advanced dementia, at end-of-life or with atypical Parkinsonism will be excluded. A parallel mixed methods process evaluation will explore the factors promoting or inhibiting implementation, uptake, use, effectiveness and cost-effectiveness of the Toolkit and sessions. DISCUSSION: If successful, the Live Well with Parkinson's Toolkit could be used as a model for other complex long-term disorders, including dementia. This would bridge existing gaps in the NHS (as shown by the national Parkinson's audit data), by enabling patients and carers to access personalised information, advice and support on symptom management and 'living well' with Parkinson's. TRIAL REGISTRATION: ISRCTN92831552. Registered on 26th Oct 2021.

Temporally non-regular patterns of deep brain stimulation (DBS) enhance assessment of evoked potentials while maintaining motor symptom management in Parkinson's disease (PD).

BACKGROUND: Traditional deep brain stimulation (DBS) at fixed regular frequencies (>100 Hz) is effective in treating motor symptoms of Parkinson's disease (PD). Temporally non-regular patterns of DBS are a new parameter space that may help increase efficacy and efficiency. OBJECTIVE: To compare the effects of temporally non-regular patterns of DBS to traditional regularly-spaced pulses. METHODS: We simultaneously recorded local field potentials (LFP) and monitored motor symptoms (tremor and bradykinesia) in persons with PD during DBS in subthalamic nucleus (STN). We quantified both oscillatory activity and DBS local evoked potentials (DLEPs) from the LFP. RESULTS: Temporally non-regular patterns were as effective as traditional pulse patterns in modulating motor symptoms, oscillatory activity, and DLEPs. Moreover, one of our novel patterns enabled recording of longer duration DLEPs during clinically effective stimulation. CONCLUSIONS: Stimulation gaps of 50 ms can be used to increase efficiency and to enable regular assessment of long-duration DLEPs while maintaining effective symptom management. This may be a promising paradigm for closed-loop DBS with biomarker assessment during the gaps.