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Background: Little is known about factors modulating pain and pain‐related functional impairment in isolated cervical dystonia (CD). Objective: The aim was to assess the prevalence and interrelationship between pain‐modulating factors and pain‐related determinants of functional impairment and quality of life in CD. Methods: We analyzed pain‐aggravating and pain‐relieving external factors, the degree of pain‐related functional impact on routine activities, and the relationship between these and pain severity, using cross‐sectional data collected using the Pain in Dystonia Scale (PIDS) from 85 participants with CD. Pairwise correlation analyses and age‐ and sex‐adjusted linear regression models estimated the relationship between pain‐modulating factors and pain severity, and the impact of pain severity, dystonia severity, and psychiatric symptoms on pain‐related functional impairment and disease‐specific quality of life (measured using the Craniocervical Dystonia Questionnaire‐24). Results: Stress and prolonged fixed position were the most frequent and impacting pain triggers, with women reporting larger impact. The average impact of pain‐relieving factors was lower than that of pain triggers. Physical exercise and social gatherings were the most impacted activities by pain in CD. The intensity of external modulating factors was a predictor of pain severity. Severity of pain, CD, and psychiatric symptoms independently predicted pain‐related functional impairment, whereas quality of life was predicted by pain severity, pain‐related functional impairment, and psychiatric symptom severity, but not dystonia severity. Conclusion: The PIDS provides insight into external modulation and functional impact of pain in CD. The pattern of external modulation of pain in CD is in line with a multifactorial modulation and complex physiology. [ABSTRACT FROM AUTHOR]

Background: Cognitive impairment is common in Parkinson's disease (PD) but has limited treatment options. Medication has shown some benefits but accompanied by risk of adverse events. We aimed to investigate effectiveness and feasibility of nonpharmacological interventions for people with PD and cognitive impairment on patient‐centred outcomes. Methods: Systematic searches of five databases (MEDLINE, Embase, CINAHL, PsycINFO and Web of Science) were performed for studies evaluating nonpharmacological interventions for people with PD and cognitive impairment, reporting health‐related quality of life, function (activities of daily living) or wellbeing outcomes, published up to 15 May 2023. Two reviewers independently assessed full‐text articles and one reviewer extracted data, with a second reviewer reliability checking all data extraction. Randomised controlled trials (RCTs) were synthesised through meta‐analysis using a random‐effects meta‐analysis with restricted maximum likelihood method pooled estimate and observational studies through narrative synthesis. Results: Eleven RCTs and three noncontrolled studies were included, studying a range of interventions: cognitive training, cognitive stimulation, cognitive rehabilitation, physical and cognitive exercise, goal management training, psychoeducation with mindfulness, broader rehabilitation programs and a psychological intervention. Feasibility was demonstrated. The majority showed effectiveness for their primary outcome. Meta‐analysis showed no significant improvement in HrQoL (seven RCTs: pooled effect, standardised mean difference, −0.20 [−0.57−0.18]) or function (four RCTs: 0.08 [−0.36, 0.52]), and wellbeing measurement was infrequent and indirect. Quality of evidence was judged as very low, limiting the conclusions drawn. Conclusion: Whilst nonpharmacological trials for cognitive impairment in PD have shown promise, we found no evidence of effectiveness on HrQoL, function or wellbeing. However, this is based on very low‐quality evidence from a small number of diverse studies, not powered for these outcomes. Feasibility of a range of interventions has been demonstrated in both PD‐mild cognitive impairment and PD‐dementia. There is a need for more robust, adequately powered studies. [ABSTRACT FROM AUTHOR]

Background: Pain is a frequent yet poorly characterized symptom of multiple system atrophy (MSA). Understanding the factors influencing pain and its burden is crucial for improving the symptomatic treatment and quality of life of MSA individuals. Objective: This study aimed at assessing the prevalence, characteristics, and current treatment strategies for pain in MSA. Methods: A community‐based, online survey was conducted from February to May 2023. Invitations were extended to MSA individuals and informal MSA caregivers through patient advocacies and social media. Results: We included 190 persons with MSA and 114 caregivers. Eighty‐seven percent of MSA individuals reported pain, which was more prevalent among women (odds ratio [OR]: 6.38 [95% confidence interval, CI: 1.27–32.08], P = 0.025) and low‐income groups (OR: 5.02 [95% CI: 1.32–19.08], P = 0.018). Neck and shoulders (58%), back (45%), and legs (45%) were mostly affected. In the neck and shoulders, pain was associated with MSA core features, like orthostatic intolerance (OR: 4.80 [95% CI: 1.92–12.02], P = 0.001) and antecollis (OR: 3.24 [95% CI: 1.54–6.82], P = 0.002). Seventy‐six percent of individuals experiencing pain received treatment, mostly nonsteroidal anti‐inflammatory drugs (47%), acetaminophen (39%), and opioids (28%). Only 53% of respondents reported at least partial satisfaction with their current pain management. Pain mostly impacted work, household activities, and hobbies of MSA individuals, and caregivers' social activities. Conclusions: Pain is more prevalent than previously reported in MSA and particularly affects women and low‐income groups. Despite its frequency, pain management remains suboptimal, highlighting an urgent therapeutic need, likely entailing an optimized management of MSA core motor and non‐motor features. © 2024 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society. [ABSTRACT FROM AUTHOR]

Objective: The Progressive Supranuclear Palsy quality of life scale (PSP‐QoL) has been shown to be a useful tool for capturing health‐related quality of life of patients in "everyday life" and in progressive supranuclear palsy (PSP) research. However, at 45 items in length, the questionnaire can take a long time, exhausting PSP patients, in particular if cognitive impaired, which can have a negative impact on the assessment. The aim of this study was to establish a condensed version of the PSP‐QoL for research and routine clinical care. Methods: In this retrospective study, data originating from a German cohort of PSP patients was analyzed. Data from 245 PSP patients were included in this study. The short PSP‐QoL questionnaire was created using a two‐factor solution and item‐total and inter‐item correlations for mental and physical aspects of daily living of the PSP‐QoL followed by confirmatory factor analysis. Results: The final scale included 12 items representing mental (five items) and physical symptoms (seven items). The specified two‐factor model displayed an excellent fit in the confirmatory factor analysis. The short Progressive Supranuclear Palsy Quality of Life scale (PSP‐ShoQoL) correlated moderately with the PSP Rating Scale (r [243] = 0.514, P < 0.001) and Geriatric depression scale (r [231] = 0.548, P < 0.001). Sensitivity to change confirmed a significant decrease in QoL after 12 months. Discussion: In this study, we created a 12‐item PSP‐ShoQoL designed to "facilitate" daily clinical work that correlated strongly with the PSP‐QoL and was sensitive to change. © 2024 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society. [ABSTRACT FROM AUTHOR]

Background: Cognitive impairment is common in Parkinson's disease (PD), but care needs and resource use for those with significant cognitive impairment are not well established. Methods: 675 participants with PD from the international Care of Late-Stage Parkinsonism (CLaSP) study were grouped into those without (n = 333, 49%) and with cognitive impairment (MMSE < 24/30 or diagnosis of dementia or Mild Cognitive Impairment; n = 342, 51%) and their clinical features, care needs and healthcare utilisation compared. The relationship between cognition and healthcare consultations was investigated through logistic regression. Results: Cognitive impairment was associated with more motor and non-motor symptoms, less antiparkinsonian but higher rates of dementia and antipsychotic medication, worse subjective health status and greater caregiver burden. A considerable proportion did not have a pre-established cognitive diagnosis. Care needs were high across the whole sample but higher in the cognitive impairment group. Home care and care home use was higher in the cognitive impairment group. However, use of healthcare consultations was similar between the groups and significantly fewer participants with cognitive impairment had had recent PD Nurse consultations. Worse cognitive impairment was associated with lower frequency of recent PD nurse and multidisciplinary therapy consultation (physiotherapy, massage, occupational therapy, speech training and general nursing). Conclusions: Those with cognitive impairment have more severe PD, higher care needs and greater social care utilisation than those with normal cognition, yet use of health care services is similar or less. Cognitive impairment appears to be a barrier to PD nurse and multidisciplinary therapy consultations. This challenges current models of care: alternative models of care may be required to serve this population. Plain Language Summary: Parkinson's disease is a long-term progressive health condition. Over time, many people with Parkinson's develop problems with thinking and memory, called cognitive impairment. This can negatively impact the daily lives of the person with Parkinson's and their caregiver. It is also thought to be a barrier to accessing healthcare. How people with Parkinson's who have cognitive impairment use healthcare and detail of their care needs is not well known. We analysed data from a large sample of people with advanced Parkinson's from six European countries to investigate their symptoms, care needs and healthcare use. We compared those with cognitive impairment to (342 people) to those without cognitive impairment (333 people). We found that those with cognitive impairment had more severe Parkinson's across a range of symptoms compared to those without cognitive impairment. They also had more care needs, reported their health status to be worse, and their caregivers experienced greater strain from caring. Whilst use of other healthcare services was similar between the two groups, those with cognitive impairment were less likely to have recently seen a Parkinson's nurse than those without cognitive impairment. Further analysis showed an association between cognitive impairment and not having seen a Parkinson's nurse or therapist recently, taking psychiatric symptoms, functional disability and care home residence into account. Therapists included were physiotherapy, massage, occupational therapy, speech training and general nursing. These findings highlight unmet need. We suggest that healthcare should be more targeted to help this group of people, given their higher care needs. [ABSTRACT FROM AUTHOR]

Introduction: People with Parkinson's disease (PD) often present with disabling neuropsychiatric symptoms. Compassionate mind training (CMT) is a psychological approach effective in reducing stress and promoting psychological well‐being. Heart rate variability (HRV), a measure reflecting sympathovagal balance, has been associated with psychological well‐being and a compassionate attitude. Aim: To assess the feasibility and effectiveness of CMT in enhancing the quality of life and psychological well‐being in PD patients. Additionally, we evaluated HRV as a physiomarker for assessing the CMT outcomes. Methods: Twenty‐four PD patients participated in the study. A 6‐week online CMT intervention was delivered on a weekly basis. At baseline and post‐intervention patients completed questionnaires assessing depression, anxiety and quality of life. In a subsample of 11 patients, HRV was measured at baseline and post‐intervention in three conditions: at rest, during stress and after 3 min of deep breathing. Results: The attendance rate was 94.3%. Quality of life and perceived stigma improved post‐intervention as compared with baseline (p = 0.02 and p = 0.03 for PD Questionnaire‐39 total score and Stigma subscore, respectively). After CMT, patients presented better physiological regulation to stress, as measured by higher HRV as compared with baseline (p = 0.005). Notably, patients who were more resilient to stress at baseline (less decrease in HRV during stress) experienced a more substantial reduction in anxiety and depression following CMT. Conclusions: CMT is feasible and can improve quality of life and stigma in PD patients. HRV emerges as a promising physiomarker for predicting and measuring the outcomes of psychological interventions in PD. [ABSTRACT FROM AUTHOR]

Background: A history of anxiety is more common in people with Parkinson's disease (PD). The prospective risk of PD in those newly presenting with anxiety and factors that increase the risk of PD in patients with anxiety have not been investigated. Aim: To investigate the incidence of PD in people with anxiety aged ≥50 years and clinical features associated with later diagnosis of PD in people with anxiety. Design and setting: A retrospective cohort study using UK primary care data between 2008 and 2018, assessing patients with new-onset anxiety aged ≥50 years. Method: Weibull survival regression models were fitted and hazard ratios (HRs) for modelling time-to-PD was estimated in those with and without anxiety, and when determining the risk of developing PD in those with anxiety. Results were adjusted for sociodemographic and lifestyle factors, and relevant physical and mental health conditions. Results: The risk of PD increased two-fold compared with the non-anxiety group after adjustment for age, sex, social deprivation, lifestyle factors, severe mental illness, head trauma, and dementia (HR 2.1, 95% confidence interval = 1.9 to 2.4). In those with anxiety, the presence of depression, hypotension, tremor, rigidity, balance impairment, constipation, sleep disturbance, fatigue, and cognitive impairment were associated with an increased risk of developing PD. Conclusion: The risk of developing PD was at least doubled in people with anxiety compared with those without. The clinical features of those who developed PD can help identify patients presenting with anxiety who are in the prodromal phase of PD. [ABSTRACT FROM AUTHOR]

Reduced spontaneous blinking is a recognized Parkinson's disease (PD) feature. In contrast, voluntary blinking has been less studied and might serve as a measurable marker of facial bradykinesia. We tested 31 PD patients and 31 controls. Participants were filmed during conversation and a rapid blinking task. Both tasks were videorecorded to count the number of blinks per second. PD patients had lower blink rates. Rapid blinking accurately discriminated between groups with 77% sensitivity and 71% specificity. To conclude, rapid blinking may be a simple and quantifiable task of facial bradykinesia. Plain Language Summary: Decreased blinking without conscious effort is a well-known characteristic of Parkinson's disease (PD). However, voluntary blinking, which is blinking on purpose, has not been studied as much and could be a sign of slower facial movements. We studied a group of people with PD and another one without the disease. We recorded videos of them talking and doing a task where they blinked quickly. Then, we counted how many times they blinked per second in each video. We found that people with PD blinked less often. The rapid blinking task accurately distinguished between those with PD and those without it, being correct about 77% of the time for spotting PD and 71% for spotting non-PD. In conclusion, the rapid blinking task could be a simple and measurable way to identify slower facial movements in PD. [ABSTRACT FROM AUTHOR]

Background: Isolated Rapid Eye Movement (REM) sleep Behavior Disorder (iRBD) requires quantitative tools to detect incipient Parkinson's disease (PD). Methods: A motor battery was designed and compared with the Movement Disorder Society‐Unified Parkinson's Disease Rating Scale part III (MDS‐UPDRS‐III) in people with iRBD and controls. This included two keyboard‐based tests (BRadykinesia Akinesia INcoordination tap test and Distal Finger Tapping) and two dual tasking tests (walking and finger tapping). Results: We included 33 iRBD patients and 29 controls. The iRBD group performed both keyboard‐based tapping tests more slowly (P < 0.001, P = 0.020) and less rhythmically (P < 0.001, P = 0.006) than controls. Unlike controls, the iRBD group increased their walking duration (P < 0.001) and had a smaller amplitude (P = 0.001) and slower (P = 0.007) finger tapping with dual task. The combination of the most salient motor markers showed 90.3% sensitivity for 89.3% specificity (area under the ROC curve [AUC], 0.94), which was higher than the MDS‐UPDRS‐III (minus action tremor) (69.7% sensitivity, 72.4% specificity; AUC, 0.81) for detecting motor dysfunction. Conclusion: Speed, rhythm, and dual task motor deterioration might be accurate indicators of incipient PD in iRBD. © 2024 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society. [ABSTRACT FROM AUTHOR]

Purpose: To examine the association of several antihypertensive medication classes with incidence of Parkinson's disease (PD), taking into account possible underlying conditions. Methods: In a case-control study based on a large primary care database and including 21,981 PD cases and 21,981 non-PD controls matched for age, sex, and possible treatment indications associations with different antihypertensive medication groups, including diuretics, betablockers, calcium channel blockers, angiotensin-converting enzyme inhibitors and angiotensin-II receptor-blockers and PD were examined. Results: Antihypertensive medications overall were associated with a lower risk of subsequent diagnosis of PD (OR: 0.94, 95% CI 0.90–0.97), with the negative association most significant for medications acting on the renin–angiotensin–aldosterone system. A positive association with diagnosis of PD was only seen for betablockers and restricted to those with relatively young age and not in those with longer treatment duration. Conclusion: When taking into account underlying diagnoses, antihypertensive medications overall were associated with a reduced incidence of PD. [ABSTRACT FROM AUTHOR]

Background: Cognitive impairment is common in Parkinson's disease and is associated with poorer quality of life and increased caregiver distress, but little qualitative information is available on lived experiences of people with Parkinson's who also have cognitive impairment. Objectives: The aim of this study was to explore the challenges of cognitive impairment in Parkinson's, triangulating the perspectives of people with Parkinson's, caregivers and healthcare professionals. Methods: Semistructured interviews were conducted with 11 people with Parkinson's and cognitive impairment, 10 family caregivers and 27 healthcare professionals, using purposive sampling in the United Kingdom (2019–2021). Cognitive impairment was identified by healthcare professionals and required subjective symptoms. Relevant cognitive diagnoses were recorded. Interviews were audio‐recorded, transcribed and analysed using reflexive thematic analysis. Results: An overarching concept of the compound impact of cognitive and physical decline was developed, with six themes. Four themes describe the experience of living with cognitive impairment in Parkinson's: (1) Challenges in Daily Activities, (2) Psychological Impact and (3) Evolving Communication Difficulties together contributing to (4) Social Shift, encompassing a reduction in wider social activities but intensification of close relationships with increased dependence. A fifth theme (5) Living Well describes positive influences on these experiences, encompassing intrinsic motivation, self‐management strategies and supportive relationships. Furthermore, underlying and shaping the whole experience was the sixth theme: (6) Preconceptions about Cognitive Impairment, describing fear and denial of symptoms and poor understanding of the nature of cognitive impairment in Parkinson's, with differences to other dementia pathologies. Conclusions: Cognitive impairment superimposed on the existing challenges of Parkinson's has a multifaceted impact and makes living with the condition arduous. Increased understanding of the experiences of this group and employing the identified facilitators for living well may be able to improve patient and caregiver experiences. Patient or Public Contribution: Two people with Parkinson's and cognitive impairment and three caregivers contributed to the study. Between them they contributed throughout the entirety of the project, giving input at conceptualisation as well as advice and review of interview questions, participant information leaflets, recruitment, interpretation of findings and summaries of the project. [ABSTRACT FROM AUTHOR]

Background: People with Parkinson's disease has significant and increasing physical, psychosocial and spiritual needs, as well as problems with coordination and continuity of care. Despite the benefits that palliative care could offer, there is no consensus on how it should be delivered. Aim: The aim of this study is to provide a pragmatic overview of the evidence to make clinical recommendations to improve palliative care for people with Parkinson's disease and their caregivers. Design: A systematic review method was adopted to determine the strength of evidence, supported by feedback from an expert panel, to generate the 'do', 'do not do' and 'do not know' recommendations for palliative care. Data sources: Searches were conducted via OVID to access CINAHL, MEDLINE, EMBASE and the Cochrane Library from 01/01/2006 to 31/05/2021. An additional search was conducted in December 2022. The search was limited to articles that included empirical studies of approaches to enabling palliative care. Results: A total of 62 studies met inclusion criteria. There is evidence that education about palliative care and movement disorders is essential. palliative care should be multi-disciplinary, individualised and coordinated. Proactive involvement and support of caregivers throughout the illness is recommended. Limited data provide referral indicators for palliative care integration. Discussions about advance care planning should be held early. Conclusions: Consideration of palliative care integration based on symptom burden and personal preferences, coordination and continuity of care are needed to maintain the quality of life of people with Parkinson's disease and their caregivers. [ABSTRACT FROM AUTHOR]

Background: Individuals with multiple system atrophy (MSA) often complain about pain, nonetheless this remains a poorly investigated non‐motor feature of MSA. Objectives: Here, we aimed at assessing the prevalence, characteristics, and risk factors for pain in individuals with MSA. Methods: Following the Preferred Reporting Items for Systematic Reviews and Meta‐Analyzes (PRISMA) guidelines, we systematically screened the PubMED, Cochrane, and Web of Science databases for papers published in English until September 30, 2022, combining the following keywords: "pain," "multiple system atrophy," "MSA," "olivopontocerebellar atrophy," "OPCA," "striatonigral degeneration," "SND," "Shy Drager," and "atypical parkinsonism." Results: The search identified 700 records. Sixteen studies provided information on pain prevalence in cohorts of MSA individuals and were included in a qualitative assessment based on the Quality Assessment of Diagnostic Accuracy Studies (QUADAS) tool. Thirteen studies (11 cross‐sectional, two longitudinal) scored ≥14 points on QUADAS assessment and were included in a quantitative analysis, pooling data from 1236 MSA individuals. The resulting pooled prevalence of pain in MSA was 67% (95% confidence intervals [CI] = 57%–75%), and significantly higher in individuals with MSA of parkinsonian rather than cerebellar type (76% [95% CI = 63%–87%] vs. 45% [95% CI = 33%–57%], P = 0.001). Pain assessment tools and collected information were highly heterogeneous across studies. Two studies reported pain treatment strategies and found that only every second person with MSA complaining about pain had received targeted treatment. Conclusions: We found that pain is a frequent, but still under‐recognized and undertreated feature of MSA. Further research is needed to improve pain detection and treatment in MSA. [ABSTRACT FROM AUTHOR]

Background: Parkinson's Disease (PD) is associated with considerable carer burden, but there has been little qualitative research on the support needs of carers of People with Parkinson's (PwP). Methods: Semi-structured in-depth interviews with carers of PwP in 11 European countries. Results: Interviews with 36 carers of PwP were analysed. At the time of diagnosis, carers often felt that they had a role in helping get a diagnosis and then in dealing with the impact of the diagnosis on the family. Information on medication was seen as particularly important for carers, and many of the carers felt that their informational needs differed from that of the PwPs. Many of the carers also felt that they needed to be present at all appointments to request referrals or ask for medication changes. Carers of those in the later stages of the disease often reported feeling isolated and not having any time for themselves. Conclusions: The involvement of carers should be addressed more actively in the management of Parkinson's. [ABSTRACT FROM AUTHOR]

Background and purpose: Idiopathic Parkinson's disease (IPD) is a progressive neurodegenerative disorder that is strongly associated with age. The aim of the present study was to describe current sex‐ and age‐specific trends and regional differences in the incidence of IPD diagnosed in older people in Germany. Methods: This study was based on nationwide outpatient claims and drug prescription data from the German Statutory Health Insurance, covering approximately 87% of the general population. We conducted a cohort study in patients aged 50 years or older with observation time of at least 4 years. To assess the robustness of nationwide annual IPD incidence trends from 2013 to 2019, three case definitions with varying levels of stringency regarding coded outpatient diagnoses and drug prescriptions were applied. Results: In 2019, the population at risk comprised 30,575,726 persons. Using the primary and most specific case definition, annual age‐ and sex‐standardized cumulative IPD incidence decreased stepwise from 137 (2013) to 106 (2019) new cases per 100,000 persons. The decline in incidence was seen in both sexes, in all age groups and in the majority of German regions. The relative decrease (2013–2019) in the annual age‐ and sex‐standardized IPD incidence varied from 23% to 28% among case definitions. Conclusion: Our findings indicate a nationwide decline in the age‐ and sex‐standardized incidence of IPD from 2013 to 2019 in Germany. This trend was consistent using different case definitions. Further research is needed to elucidate the factors underlying this trend. [ABSTRACT FROM AUTHOR]