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Abstract Disease-modifying therapeutics in the α-synucleinopathies multiple system atrophy (MSA) and Parkinson’s Disease (PD) are in early phases of clinical testing. Involving patients’ preferences including therapy-associated risk willingness in initial stages of therapy development has been increasingly pursued in regulatory approval processes. In our study with 49 MSA and 38 PD patients, therapy-associated risk willingness was quantified using validated standard gamble scenarios for varying severities of potential drug or surgical side effects. Demonstrating a non-gaussian distribution, risk willingness varied markedly within, and between groups. MSA patients accepted a median 1% risk [interquartile range: 0.001–25%] of sudden death for a 99% [interquartile range: 99.999–75%] chance of cure, while PD patients reported a median 0.055% risk [interquartile range: 0.001–5%]. Contrary to our hypothesis, a considerable proportion of MSA patients, despite their substantially impaired quality of life, were not willing to accept increased therapy-associated risks. Satisfaction with life situation, emotional, and nonmotor disease burden were associated with MSA patients’ risk willingness in contrast to PD patients, for whom age, and disease duration were associated factors. An individual approach towards MSA and PD patients is crucial as direct inference from disease (stage) to therapy-associated risk willingness is not feasible. Such studies may be considered by regulatory agencies in their approval processes assisting with the weighting of safety aspects in a patient-centric manner. A systematic quantitative assessment of patients’ risk willingness and associated features may assist physicians in conducting individual consultations with patients who have MSA or PD by facilitating communication of risks and benefits of a treatment option.

Abstract Background Self‐rated health (SRH), a measure of self‐reported general health, is a robust predictor of morbidity and mortality in various populations, including people with diabetes. Diabetes is negatively associated with SRH and quality of life (QoL). Little is known about how people with diabetes rate their health and which aspects influence the rating. Also, the predictive value of SRH on future QoL has not yet been evaluated. Methods We analyzed data from 46 592 participants of the Survey of Health, Ageing and Retirement in Europe (SHARE). Using linear regression, we aimed to determine which sociodemographic, socioeconomic, medical, social, mental, and health behavior factors determine SRH in people with diabetes. In addition, we analyzed the predictive value of SRH on future QoL using the generalized estimating equations procedure. Results We determined that country, current job situation, hospitalization, pain, polypharmacy, memory, eyesight, activities of daily living, number of chronic diseases, and depression are all linked to SRH. Together these variables explained 38% of the SRH's variance, whereas depression, pain, and memory had the greatest influence on SRH of people with diabetes. We also found that SRH independently predicted future QoL, supported by a regression coefficient of β = −1.261 (Wald chi‐square test, χ2 = 22.097, df = 1, p

Abstract Background The Comprehensive Geriatric Assessment (CGA) records geriatric syndromes in a standardized manner, allowing individualized treatment tailored to the patient’s needs and resources. Its use has shown a beneficial effect on the functional outcome and survival of geriatric patients. A recently published German S1 guideline for level 2 CGA provides recommendations for the use of a broad variety of different assessment instruments for each geriatric syndrome. However, the actual use of assessment instruments in routine geriatric clinical practice and its consistency with the guideline and the current state of literature has not been investigated to date. Methods An online survey was developed by an expert group of geriatricians and sent to all licenced geriatricians (n = 569) within Germany. The survey included the following geriatric syndromes: motor function and self-help capability, cognition, depression, pain, dysphagia and nutrition, social status and comorbidity, pressure ulcers, language and speech, delirium, and frailty. Respondents were asked to report which geriatric assessment instruments are used to assess the respective syndromes. Results A total of 122 clinicians participated in the survey (response rate: 21%); after data cleaning, 76 data sets remained for analysis. All participants regularly used assessment instruments in the following categories: motor function, self-help capability, cognition, depression, and pain. The most frequently used instruments in these categories were the Timed Up and Go (TUG), the Barthel Index (BI), the Mini Mental State Examination (MMSE), the Geriatric Depression Scale (GDS), and the Visual Analogue Scale (VAS). Limited or heterogenous assessments are used in the following categories: delirium, frailty and social status. Conclusions Our results show that the assessment of motor function, self-help capability, cognition, depression, pain, and dysphagia and nutrition is consistent with the recommendations of the S1 guideline for level 2 CGA. Instruments recommended for more frequent use include the Short Physical Performance Battery (SPPB), the Montreal Cognitive Assessment (MoCA), and the WHO-5 (depression). There is a particular need for standardized assessment of delirium, frailty and social status. The harmonization of assessment instruments throughout geriatric departments shall enable more effective treatment and prevention of age-related diseases and syndromes.

Abstract Background Anxiety is one of the most common but often overlooked mood-related nonmotor symptoms in people with Parkinson’s disease (PD). To improve the well-being of people with PD, it is important to understand the impact of anxiety in PD, especially its association with depressive and motor symptoms and its impact on health-related quality of life (HRQoL). Methods 91 people with PD were assessed between June 2017 and June 2018. Anxiety was measured using the Geriatric Anxiety Scale (GAS) and its cognitive, somatic, and affective subscales. HRQoL was assessed using the Parkinson’s Disease Questionnaire 39 (PDQ-39). Moreover, sociodemographic information, depressive symptoms, cognition, motor and nonmotor symptoms were assessed. Descriptive statistics, regression analyses, and path analyses were performed to understand predictors of anxiety and its influence on HRQoL. Results Of the 91 people with PD, 35 (38.5%) experienced anxiety. Anxiety symptoms in these individuals primarily manifest as somatic sensations. Anxiety, motor, and depressive symptoms are interlinked but contribute individually to HRQoL. Beyond motor symptoms, cognitive and affective aspects of anxiety impact HRQoL. While anxiety and depression overlap, the somatic and cognitive aspects of anxiety play a significant role in determining HRQoL in addition to depressive symptoms. Conclusion Our study used the GAS and its three subscales to shed light on the connections between anxiety, depression, and motor impairment in people with PD. Although anxiety is linked to depression and motor symptoms, it independently affects the HRQoL of people with PD. Thus, it is crucial to adopt a comprehensive diagnostic approach that detects and considers the impact of anxiety on HRQoL in PD.

Abstract Background Nonadherence to medication contributes substantially to worse health outcomes. Especially among older adults with chronic illness, multimorbidity leads to complex medication regimes and high nonadherence rates. In previous research, depressive symptomology has been identified as a major contributor to nonadherence, and some authors hypothesize a link via motivational deficits and low self-efficacy. However, the exact mechanisms linking depressive symptomology and nonadherence are not yet understood. This is in part because the often-employed sum scores cannot do justice to the complexity of depressive symptomology; instead, it is recommended to assess the influence of individual symptoms. Methods Following this symptom-based approach, we performed correlation, network and regression analysis using depressive symptoms as depicted by the items of the revised Beck Depression Inventory II (BDI) to assess their influence with nonadherence in N = 731 older adults with chronic neurological diseases. Nonadherence was measured with the self-report Stendal Adherence to Medication Score (SAMS). Results Even when controlling for sociodemographic and health-related covariates, the BDI remained the most influential contributor to nonadherence. Across different methods, Loss of Interest and Difficulty with Concentration were identified as particularly influential for nonadherence, linking nonadherence with other affective or somatic BDI items, respectively. Additionally, Fatigue, Problems with Decision Making, Suicidal Thoughts, and Worthlessness contribute to nonadherence. Conclusion Using a symptom-driven approach, we aimed to understand which depressive symptoms contribute to higher levels of nonadherence. Our results refine previous hypotheses about motivation and control beliefs by suggesting that it is not merely a lack of beliefs in the efficacy of medication that connects depressive symptoms and nonadherence, but rather an overall lack of interest in improving one’s health due to feelings of worthlessness and suicidal tendencies. This lack of interest is further substantiated by already sparse resources caused by changes in concentration and fatigue. In order to improve health outcomes and reduce nonadherence, these associations between depressive symptoms must be further understood and targeted in tailored interventions.

Muscle ultrasound is a valuable non-invasive and cost-effective method in assessing muscle mass and structure, both of which are significant indicators for the development of sarcopenia and frailty in elderly individuals. Sarcopenia refers to the loss of muscle mass and strength that occurs with age, whereas frailty is a complex geriatric syndrome characterized by reduced physical function and an increased susceptibility to negative health outcomes. Both conditions are prevalent in older adults and are associated with higher risks of falls, disability, and mortality. By measuring muscle size and structure and several other ultrasound parameters, including muscle thickness, cross-sectional area, echogenicity (brightness in the ultrasound image), pennation angle, and fascicle length ultrasound can assist in identifying sarcopenia and frailty in older adults. In addition, ultrasound can be used to evaluate muscle function such as muscle contraction and stiffness, which may also be affected in sarcopenia and frailty. Therefore, muscle ultrasound could lead to better identification and tracking of sarcopenia and frailty. Such advancements could result in the implementation of earlier interventions to prevent or treat these conditions, resulting in an overall improvement in the health and quality of life of the elderly population. This narrative review describes the benefits and challenges when using ultra-sound for the evaluation of frailty and sarcopenia.

Abstract Background Self-management of health refers to various actions and decisions that impact health outcomes. To improve health, independence, and quality of life (QoL) while reducing healthcare utilization and costs, patients’ self-management abilities can be enhanced. However, disease-specific self-management interventions may not be applicable for older adults with multiple illnesses. Instead, focusing on prevalent geriatric syndromes, such as frailty, cognitive decline, pain, incontinence, or impaired mobility, may be more beneficial. To achieve this, a detailed understanding of the specific needs of the older population is crucial. Methods Patients who are 70 years old or older will be chosen from four geriatric hospitals, which include both inpatient and outpatient facilities. At baseline, each participant will undergo a comprehensive geriatric evaluation and answer various questionnaires that focus on their current self-management abilities, self-efficacy, anxiety, aging perception, and QoL. Moreover, extensive data on the presence and impact of geriatric syndromes will be gathered. Three and six months after the initial evaluation, follow-up assessments will be conducted to identify any changes in participants’ health, independence in daily activities, geriatric syndromes, cognition and mood, QoL, and self-management. Discussion The present investigation aims to assess the factors that may facilitate or impede self-management in older adults afflicted with geriatric syndromes. Instead of concentrating on particular diseases, this study will analyze the association between self-management and geriatric syndromes. The information obtained will contribute to clinical expertise on the self-management habits of older adults and their effects on their well-being, autonomy, and overall QoL, as well as provide insights into geriatric syndromes. This valuable knowledge will be crucial for developing personalised programs to enhance self-management among older adults. Trial registration German Trial Register (Deutsches Register Klinischer Studien) DRKS00031016.

Abstract Background Nonadherence to medication is a major issue in patients with chronic disorders such as Parkinson’s disease (PD). Many interventions for increasing adherence have been tested, and these have shown weak-to-moderate efficiency. Although the best methods to improve adherence remain unclear, it is reasonable to use tailored interventions instead of the “one-size-fits-all” approach. Methods A randomized, controlled, triple-blinded trial in elderly patients with PD is conducted to test the efficacy of AdhCare, a tailored intervention to enhance adherence compared with that achieved with routine care (64 participants per arm). Motor function, quality of life, and adherence measures will be assessed at baseline and at 3 and 6 months of follow-up. The type of intervention depends on the main personal reason for nonadherence (e.g., forgetting to take the medication or poor knowledge about the medication). Discussion The results of this study will provide valuable information for health professionals and policymakers on the effectiveness of tailored interventions in elderly patients with PD. Trial registration German Clinical Trials Register DRKS00023655. Registered on 24 February 2021. Last update on 22 March 2023.

Abstract As social exclusion can be linked to worse health and overall reduced quality of life, we describe social exclusion in people with diabetes and assess whether diabetes can be considered as a risk factor for social exclusion. We analyzed two waves (2014, 2017, N = 6604) from a survey of community-dwelling people aged > 40 using linear regression, group comparison and generalized estimating equations to explore the association between diabetes, social exclusion, socioeconomic, physical and psychosocial variables. In the entire cohort, diabetes was cross-sectionally associated with social exclusion after adjusting for covariates (p = 0.001). In people with diabetes, social exclusion was further associated with self-esteem (p

Abstract Quality of life (QoL) in people with Parkinson´s disease (PD) is commonly measured with the PD questionnaire-39 (PDQ-39), but its factor structure and construct validity have been questioned. To develop effective interventions to improve QoL, it is crucial to understand the connection between different PDQ-39 items and to assess the validity of PDQ-39 subscales. With a new approach based on network analysis using the extended Bayesian Information Criterion Graphical Least Absolute Shrinkage and Selection Operator (EBICglasso) followed by factor analysis, we mostly replicated the original PDQ-39 subscales in two samples of PD patients (total N = 977). However, model fit was better when the “ignored” item was categorized into the social support instead of the communication subscale. In both study cohorts, “depressive mood”, “feeling isolated”, “feeling embarrassed”, and “having trouble getting around in public/needing company when going out” were identified as highly connected variables. This network approach can help to illustrate the relationship between different symptoms and direct interventional approaches in a more effective manner.

IntroductionPrevious longitudinal studies identified various factors predicting changes in Quality of Life (QoL) in people with diabetes mellitus (PwDM). However, in these studies, the stability of QoL has not been assessed with respect to individual differences.MethodsWe studied the predictive influence of variables on the development of QoL in PwDM across three waves (2013–2017) from the cross-national panel dataset Survey of Health, Ageing, and Retirement in Europe (SHARE). To determine clinically meaningful changes in QoL, we identified minimal clinically important difference (MCID). Linear regressions and Linear Mixed Models (LMM) were conducted to determine factors associated with changes in QoL.ResultsOn average, QoL remained stable across three waves in 2989 PwDM, with a marginal difference only present between the first and last wave. However, when looking at individual trajectories, 19 different longitudinal patterns of QoL were identified across the three time-points, with 38.8% of participants showing stable QoL. Linear regression linked lower QoL to female gender, less education, loneliness, reduced memory function, physical inactivity, reduced health, depression, and mobility limitations. LMM showed that the random effect of ID had the strongest impact on QoL across the three waves, suggesting highly individual QoL patterns.ConclusionThis study enhances the understanding of the stability of QoL measures, which are often used as primary endpoints in clinical research. We demonstrated that using traditional averaging methods, QoL appears stable on group level. However, our analysis indicated that QoL should be measured on an individual level.

Objective To describe prevalence and associated factors of social deprivation in people with Parkinson’s disease (PwPD).Design Cross-sectional and longitudinal cohort study.Setting Data were taken from the Survey of Health, Ageing and Retirement in Europe (SHARE), a multidisciplinary, cross-national and longitudinal research project.Participants Community-dwelling adults from waves 5 (2013, n=66 188) and 6 (2015, n=68 186) of the SHARE dataset. After longitudinal analyses, participants in wave 5 can be retrospectively divided into the following three subgroups: PwPD at wave 5 (n=559), people newly reported PD from wave 5 to wave 6 (prodromal PD; n=215) and people without PD (n=46 737).Outcome measures The prevalence and associated factors of social deprivation in PD, its impact on quality of life (QoL) and its onset within the course of PD.Results PwPD had higher indices for material and social deprivation than non-PD participants, and 20% of PwPD were at risk of social exclusion. Social deprivation alone accounted for 35% and material deprivation for 21% of QoL variance and remained significant predictors of QoL after adjustment for cofactors. Social deprivation and risk of social exclusion were already increased in people with prodromal PD, and accordingly preceded PD diagnosis in wave 6.Conclusions For the treatment of PD, we should consider the impact of social deprivation and exclusion on QoL and their association with mental and physical functioning. However, the relevance of social deprivation as a prodromal phenomenon requires further investigation.

IntroductionWith demographic changes, prioritizing effective care for geriatric patients to maintain functionality, independence, and quality of life is crucial. Well-developed self-management or self-care abilities, which can be maintained and improved through interventions, are of the utmost importance. To implement these interventions tailored and effectively, a thorough assessment of the individual’s self-management and self-care abilities is required.ObjectiveThis scoping review aimed to identify self-management and self-care instruments suitable for geriatric patients, their underlying theories and definitions of self-management and self-care, and their similarities and differences in item content.MethodsA systematic search of the PubMed and CINAHL databases was conducted to identify retrievable full-text articles published in English in the medical and nursing fields since the 1970s, which were validated on a sample with an average age of at least 70 years, used generic rather than disease-specific items, and addressed the broad range of self-management and self-care abilities.ResultsOf the 20 included articles, six instruments were identified that were based on different theories and offered varying definitions of self-management or self-care. Despite these differences, all emphasize empowered individuals taking an active role in their care. Most address actual behavior and abilities referring to lifestyle factors and (anticipated) adjustment behavior. However, crucial aspects, such as psychological factors, (instrumental) activities of daily living, and social environment are not fully addressed in these instruments, nor are the types of execution to which the items refer, such as wants, feelings, confidence, or attitudes.ConclusionTo fully understand how geriatric patients implement daily self-management or self-care, a combination of instruments covering the important factors of self-management and self-care and addressing multiple types of item execution, such as behaviors, abilities, wants, or attitudes, is recommended. This review provides the first comprehensive overview of self-management and self-care instruments suitable for geriatric patients.

IntroductionIn previous cross-sectional and longitudinal studies, depressive symptoms have been associated with lower hand grip strength (HGS), which is a convenient measure of overall muscular strength and serves as a marker of poor health. Most studies have considered low sample sizes or highly selective patient cohorts.MethodsWe studied the association between depressive symptoms (EURO-D) and HGS in three waves from the cross-national panel dataset Survey of Health, Aging, and Retirement in Europe (SHARE). Linear regressions and Generalized Estimating Equations (GEE) were conducted to determine factors associated with depressive symptoms and investigate whether HGS predicts future depressive symptoms.ResultsCross-sectional HGS explained 7.0% (Wave 4), 5.7% (Wave 5), and 6.4% (Wave 6) of the EURO-D variance. In the GEE, we analyzed people without depression in Wave 4 (N = 39,572). HGS predicted future EURO-D (B = −0.21, OR = 0.979, 95%CI (0.979, 0.980), p

Measurement(s) adherence Technology Type(s) questionnaires Factor Type(s) personal factors Sample Characteristic - Organism Homo sapiens Sample Characteristic - Environment inpatient and outpatient setting Sample Characteristic - Location Germany

BackgroundLoneliness is a growing issue for public health in an aging society. However, there is a lack of research on loneliness in people with Parkinson’s disease (PwPD).MethodsWe analyzed cross-sectional and longitudinal data from wave 5 (N = 559 PwPD) and 6 (N = 442 PwPD) from the Survey of Health, Ageing and Retirement in Europe (SHARE). Loneliness was assessed using the three-item version of the Revised UCLA Loneliness Scale. Descriptive statistics, group comparisons, multiple linear regressions, and generalized estimating equation analysis were performed to explore loneliness prevalence, its relationship with other factors, and its impact on Quality of Life (QoL) in PwPD.ResultsDepending on the used cut-off, the prevalence of loneliness in PwPD ranged from 24.1 to 53.8%. These prevalences were higher compared to people without PD. Loneliness was mainly linked to decreased functional abilities, weaker grip strength, more symptoms of depression, and country of residence. Loneliness was also associated with current QoL and predicts future QoL in PwPD, highlighting its impact on well-being.ConclusionAddressing loneliness could potentially improve QoL for PwPD, making it a modifiable risk factor that clinicians and policy-makers should consider.

IntroductionParkinson's disease (PD) is a multisystem neurodegenerative disorder characterized by motor and non-motor symptoms. In particular, non-motor symptoms have become increasingly relevant to disease progression. This study aimed to reveal which non-motor symptoms have the highest impact on the complex interacting system of various non-motor symptoms and to determine the progression of these interactions over time.MethodsWe performed exploratory network analyses of 499 patients with PD from the Cohort of Patients with Parkinson's Disease in Spain study, who had Non-Motor Symptoms Scale in Parkinson's Disease ratings obtained at baseline and a 2-year follow-up. Patients were aged between 30 and 75 years and had no dementia. The strength centrality measures were determined using the extended Bayesian information criterion and the least absolute shrinkage and selection operator. A network comparison test was conducted for the longitudinal analyses.ResultsOur study revealed that the depressive symptoms anhedonia and feeling sad had the strongest impact on the overall pattern of non-motor symptoms in PD. Although several non-motor symptoms increase in intensity over time, their complex interacting networks remain stable.ConclusionOur results suggest that anhedonia and feeling sad are influential non-motor symptoms in the network and, thus, are promising targets for interventions as they are closely linked to other non-motor symptoms.

Objectives Measuring the degree of adherence to medication is essential in healthcare However, the cut-offs provided for adherence scales are often arbitrary and disease-specific, and need to be validated against a clinical outcome. Here, we used health-related quality of life (QoL) to determine cut-offs for a self-report adherence questionnaire in patients with neurological diagnoses.Design Cross-sectional study.Participants 910 patients (age 70±8.6 years) with neurological disorders were recruited from the wards of neurology at a local university hospital. All patients received a comprehensive geriatric assessment, including assessments of adherence (Stendal Adherence to Medication Score, SAMS) and QoL (Short Form Survey SF-36).Outcome measures The main aim of the study was to define a cut-off for non-adherence at which QoL is significantly impaired. Thus, we used Spearman’s rank correlation, multivariate and univariate analyses of variance to test the impact of different adherence levels on QoL. Receiver operating characteristics and area under curve measures were then used to determine cut-off scores for adherence based on significant differences in QoL.Results Correlations between SAMS and SF-36 domains were weak (ranging between r=−0.205 for emotional well-being and r=−0.094 for pain) and the effect of non-adherence on QoL disappeared in the multivariate analysis of variance (p=0.522) after adjusting for demographical and clinical factors. SAMS cut-offs in terms of SF-36 domains varied greatly, so that an overall SAMS cut-off for this cohort could not be defined.Conclusions QoL as measured by the SF-36 is not suitable as a single outcome parameter to study the impact of non-adherence on QoL in a mixed neurological cohort. Since both QoL and adherence are heterogeneous, multifaceted constructs, it is unlikely to find an overarching cut-off applicable for all patients. Thus, it may be necessary to use disease or cohort-specific external outcome parameters to measure the indirect effect of interventions to enhance adherence.Trial registration number DRKS00016774.

Abstract Background Patients’ relationship with their GPs is linked to adherence, patient behaviour and satisfaction with healthcare. Several factors pertaining to this relationship have already been identified, however expectations and preferences vary depending on age and diagnosis. Chronically ill elderly patients constitute a group of patients with specific needs that are not yet understood. Methods For this observational study, 100 (44 female, mean age 72.72 + − 8.28 years) patients were interviewed. Multiple linear or binary logistic regression as well as analysis of variance was used to understand the link between factors pertaining to GP relationship and patient behaviour, and principal component analysis was performed to understand the underlying structure of patients’ needs. Results Patients attribute high importance to their GP’s opinion of them. On average, what the GP thinks about the patients is almost as important as what their partners think. Patients primarily want to be perceived as engaged, friendly and respected individuals, and it is important for patients to be liked by their GP. This importance is linked to active preparation; 65% of the patients prepared actively for GP consultations. Expectations regarding GP consultations can be split into two components: a medical aspect with a subfactor concerning emotional support, and a social component. Prominent factors influencing the relationship are the possibility to talk about emotions and mental well-being, trust, and GP competency. Satisfaction and trust were mainly linked to medical competency. Being able to show emotions or talk about mental well-being enhances perceived GP competence, satisfaction, and active patient preparation. However, a focus on the social component such as frequent talking about private topics reduces both perceived GP competency as well as active patient preparation. Conclusion Older patients take GP consultations seriously, and their expectations regarding GP consultations focus on medical competence and care as well as empathetic listening and understanding. Older persons seek a deeper connection to their GPs and are willing to be active and cooperative. As the patient–GP relationship influences health outcomes, treatment of older patients should be adjusted to enable this active participation.

This article presents demographic and detailed clinical data from 159 patients with Parkinson's disease or atypical Parkinsonian syndromes treated in the Parkinson's disease multimodal complex treatment (PD-MCT) from 01.01.2019 until 31.12.2019 at the Department of Neurology of the University Hospital Jena, Germany. At baseline, the following variables were collected: age, sex, diagnosis, phenotype, disease duration, Hoehn and Yahr stage, Movement Disorder Society sponsored revision of the unified Parkinson's disease rating scale (MDS-UPDRS) part I-IV, levodopa equivalent daily dose (LEDD), Tinetti test, nonmotor symptoms questionnaire (NMSQ), Montreal Cognitive Assessment (MoCA), measures of depressive symptoms using the Hospital Anxiety and Depression Scale (HADS-D) and the Beck Depression Inventory (BDI-II), health-related quality of life assessed by the Short-Form Health Survey (SF-12), and the treatment duration according to the Operation and Procedure Classification System. To assess the short-term effect of PD-MCT, the MDS-UPDRS III, Tinetti test, and LEDD were collected again at discharge from hospital. One month after discharge, a first follow-up was conducted and patients rated their general condition. One year after discharge, a second follow-up was conducted and the SF-12 was collected. The dataset allows determination of the effect of PD-MCT and identification of predictors of a beneficial treatment. The dataset can be used by clinicians and academia for further research and as reference. The dataset can also be used in a large range of other topics where demographic and clinical parameters of the PD-MCT are relevant. The data presented herein is associated with the research article “Short- and Long-Term Effect of Parkinson's Disease Multimodal Complex Treatment” [1] and available on Mendeley Data [2].

BackgroundDizziness is a common complaint in older adults. To know which factors are instrumental in enabling patients with chronic dizziness to tolerate their symptoms to a certain degree in everyday life can help to develop tailored therapies.MethodsData from 358 patients with chronic dizziness and vertigo who had attended a multimodal daycare treatment program were recorded. Data included sociodemographic parameters, dizziness-related characteristics, the Vertigo Symptom Scale (VSS), and the Hospital Anxiety and Depression Scale (HADS). Descriptive statistics, elastic net regression, and mediation analysis were used.ResultsA higher tolerance of dizziness was associated with higher age, higher intensity of dizziness, lower burden of dizziness, higher HADS depression, structural reason for dizziness (type), permanent dizziness, absence of attacks, and longer disease duration. In contrast, younger persons with attack-like dizziness reported to tolerate less dizziness. Age had a significant direct effect on tolerance (72% of the total effect) and a significant indirect effect via intensity on tolerance (28% of the total effect) in the mediation analysis.ConclusionIt can only be speculated that negative stereotypes about age-related complaints may play a role in this. Why older people tolerate more dizziness and to what extent this may contribute to lower healthcare utilization need to be investigated in further studies.

BackgroundThere is increasing evidence that subjective age is an important predictor of beneficial health outcomes besides chronological age. However, little is known about the factors associated with younger subjective age. This study aimed to identify which factors are predictive of feeling younger in old age. In this context, feeling younger was defined as an individual's perception of being younger than their current chronological age.MethodsData from 4,665 community-dwelling older people were drawn from wave 7 (2020) of the German Aging Survey (DEAS), a nationally representative study in Germany. Network, mediation, and binomial logistic regression analyses were performed to reveal the associations between feeling younger and biopsychosocial factors.ResultsA total of 4,039 participants reported feeling younger, while 626 did not. Older chronological age, engaging in sports more frequently, a better standard of living, a better state of health, higher satisfaction with life, more positive attitudes toward one's aging, and fewer depressive symptoms are associated with feeling younger in older people.ConclusionThe present study provides novel and consistent evidence regarding the association between feeling younger and biopsychosocial factors. Further research is needed to confirm these factors and identify how they can be adapted in potential intervention studies to generate the life and health circumstances that allow older people the benefit of feeling younger.

Background:Fear of falling (FOF) negatively affects health-related quality of life and is common in neurogeriatric patients, however, related parameters are not well understood. This study investigated the relationship between FOF, physical performance (as assessed with the Short Physical Performance Battery and its subscores) and other aspects of sarcopenia in a sample of hospitalized neurogeriatric patients.MethodsIn 124 neurogeriatric patients, FOF was assessed with the Falls Efficacy Scale International (FES-I). Physical performance was measured using the Short Physical Performance Battery (SPPB) including walking duration, balance and five times sit-to-stand task (5xSST) subscores. Appendicular skeletal muscle mass (ASMM) was estimated with the cross-validated Sergi equation using Bioelectrical impedance analysis measures. The Depression im Alter-Skala (DIA-S) was used to assess depressive symptoms. Multiple regression models with FES-I score as outcome variable were computed using backward selection with AICc as selection criterion, including: (i) SPPB total score, ASMM/height2, grip strength, age, gender, positive fall history, number of medications, use of a walking aid, DIA-S score and Montreal Cognitive Assessment (MoCA) score; and (ii) SPPB subscores, ASMM/height2, grip strength, age, gender, positive fall history, number of medications, DIA-S score and MoCA score, once with and once without including use of a walking aid as independent variable.ResultsLower SPPB total score, as well as lower SPPB balance and 5xSST subscores were associated with higher FES-I scores, but SPPB walking duration subscore was not. Moreover, DIA-S, number of medications and use of a walking aid were significantly associated with FOF.ConclusionOur preliminary results suggest that -if confirmed by subsequent studies- it may be worthwhile to screen patients with low SPPB balance and 5xSST subscores for FOF, and to treat especially these mobility deficits in neurogeriatric patients with FOF. Moreover, training neurogeriatric patients to use their walking aids correctly, critical evaluation of medication and treating depressive symptoms may further help reduce FOF in this highly vulnerable cohort.

This article presents data about coping with pain and health-related quality of life from 52 patients with Parkinson’s disease (PD) (without PD dementia). Coping was assessed using Coping Strategy Questionnaire (CSQ), including active/passive and cognitive/behavioral coping strategies and the felt efficacy of the coping strategies used. In addition, common PD specific assessments were recorded. For pain rating the corresponding items from the Short-Form-36 were used. The dataset allows determining factors related pain and coping in PD. The dataset can be utilized by clinicians, academics and pharmacists for further research and reference purposes. The data presented herein is associated with the research article “Pain coping strategies and their association with quality of life in people with Parkinson's Disease: a Cross-Sectional study” [1] and available on Dryad, Dataset 10.5061/dryad.2280gb5s7.

Abstract Background In patients with Parkinson’s disease (PD), depression has a strong impact on quality of life (QoL). However, little is known about the influence of subthreshold depression (STD) on QoL in PD patients. Methods A total of 230 hospitalized PD patients with normal and impaired cognitive status were included in this observational study. We collected the following data for analysis: Beck Depression Inventory level, Montreal Cognitive Assessment (MOCA) score, non-motor symptoms questionnaire score, PD questionnaire-39 (PDQ-39) score, Hoehn–Yahr stage, and Movement Disorder Society-sponsored revision of the unified PD rating scale III (MDS-UPDRS III) score. To study the impact of STD on the PDQ-39 summary index (SI) and its domains, we used multivariate analysis of variance and multivariate analysis of covariance. Results In this cohort, 80 (34.8%) patients had STD [44 (32.3%) with high MOCA score (> 21) and 36 (38.3%) with low MOCA score (

ObjectivesQuality of Life (QoL) depends on the discrepancy between desired and current experiences (referred to as the Calman gap), thus in chronic illness, adjustment of expectations and interpretation of the current situation are crucial. Depression is known to influence this gap, and the present study aims to further assess the role of resilience and health locus of control (HLC).MethodsA total of 94 patients (age M = 71.8, SD = 7.7 years) with neurological disorders were screened via telephone regarding depression, resilience and HLC. Current and desired state of several life domains were assessed, such as Fitness, General Health, Pain, Daily Activities, Finances, Leisure, and Family. Elastic net regularization and analyses of variance were used to disentangle the impact of depression, resilience, HLC, and sociodemographic factors on the perception of current and desired state, and the gap between both.ResultsA gap was present for all domains but largest for pain. Interpretation of the current state was linked to desired state, HLC, and age. All gaps were related to depression; certain domains were in addition influenced by resilience, HLC and sociodemographic factors. Of note, for most domains, patients did not select the highest possible desired state.ConclusionOlder patients with neurological disorders report a gap between current and desired state for many aspects of life. Adjusting expectations is beneficial in the face of declining health, but a reasonably increased desired state may positively influence the perception of the current situation. Depression negatively influences the interpretation of the Calman gap.

BackgroundVertigo and dizziness are common in older adults. We describe self-reported healthcare utilization because of dizziness and vertigo in older adults attending a tertiary care specialized vertigo center.MethodsData from 765 patients (45% were ≥60 years old) with chronic dizziness and vertigo who attended a daycare multimodal treatment program were recorded. Data included sociodemographic parameters, dizziness-related characteristics, the Body Sensations Questionnaire (BSQ), the Agoraphobic Cognitions Questionnaire (ACQ), and the Hospital Anxiety and Depression Scale (HADS). Also, healthcare utilization, including (1) physician and clinical services, (2) hospitalizations in the year before consulting the vertigo center, (3) prescription of drugs and other professional services were included. Descriptive statistics, exploratory data analysis, and regression models were used.ResultsIntensity of dizziness was similar in both age groups, however, distress due to dizziness was more severe in younger persons. Dizziness symptoms lasted longer in older adults than in younger persons. Older adults had a somatic diagnosis (74.6 vs. 35.0%) more frequently and reported more falls (37.2 vs. 28.5%) than younger individuals. Anxiety about bodily sensations was higher in younger patients (mean BSQ1 = 9.33 ± 5.6) than in older patients (mean BSQ1 = 6.72 ± 5.4). Older persons had fewer depressive symptoms (mean HADS depression = 5.8 ± 3.6 vs. 6.5 ± 4.1) and less anxiety (mean HADS anxiety = 5.7 ± 3.7 vs. 7.8 ± 4.1) than younger individuals. Younger people were more frequently hospitalized (24.4%) than older adults (16.3%) in the year before consulting the vertigo center. Also, younger patients and patients with non-somatic etiologies had considerably more consultations with healthcare providers than older patients. Older adults received less medication (50.3%), less physiotherapy (41%), and less psychological therapy (11.6%) for vertigo than younger people (59.7, 52.2, 20.4%, respectively).ConclusionAge-associated differences in healthcare utilization were defined in selected patients attending a specialized vertigo center. Since dizziness is frequently a heterogeneous disorder requiring interdisciplinary care, its diagnostic and therapeutic work-up must be improved for older patients with dizziness.

Abstract Background Amyotrophic Lateral Sclerosis (ALS) is a rapidly progressive neurodegenerative disorder with limited robust disease-modifying therapies presently available. While several treatments are aimed at improving health-related quality of life (HRQoL), longitudinal data on how QoL changes across the disease course are rare. Objectives To explore longitudinal changes in emotional well-being and HRQoL in ALS. Methods Of the 161 subjects initially recruited, 39 received 2 subsequent follow-up assessments at 6 and 12 months after baseline. The ALS Functional Rating Scale-Revised (ALSFRS-R) was used to assess physical impairment. HRQoL was assessed using the ALS Assessment Questionnaire (ALSAQ-40). The D50 disease progression model was applied to explore longitudinal changes in HRQoL. Results Patients were primarily in the early semi-stable and early progressive model-derived disease phases. Non-linear correlation analyses showed that the ALSAQ-40 summary index and emotional well-being subdomain behaved differently across disease phases, indicating that the response shift occurs early in disease. Both the ALSFRS-R and ALSAQ-40 significantly declined at 6- and 12-monthly follow-ups. Conclusion ALSAQ-40 summary index and emotional well-being change comparably over both actual time and model-derived phases, indicating that the D50 model enables pseudo-longitudinal interpretations of cross-sectional data in ALS.

IntroductionQuality of life (QoL) is a key outcome in healthcare. However, whether cognitively impaired people with Parkinson's disease (PD) can reliably self-report QoL is unclear, and patients are often excluded from studies based on cognition test scores. The aim of this analysis was to assess the validity of the Parkinson's Disease Questionnaire-39 (PDQ-39) in PD patients with and without cognitive impairment.MethodsIn this study, 221 individuals with PD completed the PDQ-39, Montreal Cognitive Assessment (MOCA), and Beck's Depression Inventory (BDI-II). The PDQ-39's internal consistency, convergent validity with BDI-II, and floor and ceiling effects were analyzed for patients with and without cognitive impairment.ResultsNinety-four patients showed cognitive impairment (MOCA ConclusionThe PDQ-39 can be used to measure QoL in cognitively impaired PD patients, thus test scores indicating cognitive impairment alone should not lead to exclusion of PD patients from clinical studies. Although the correlation between BDI-II and PDQ-39 shrinks for some subdomains in cognitively impairment patients, this finding may be explained by the difference in PD severity, as factors influencing QoL may shift with increasing age and PD symptoms.

There is a growing demand for reliable biomarkers to monitor disease progression in Amyotrophic Lateral Sclerosis (ALS) that also take the heterogeneity of ALS into account.In this study, we explored the association between Magnetic Resonance Imaging (MRI)-derived measures of cortical thickness (CT) and subcortical grey matter (GM) volume with D50 model parameters.T1-weighted MRI images of 72 Healthy Controls (HC) and 100 patients with ALS were analyzed using Surface-based Morphometry for cortical structures and Voxel-based Morphometry for subcortical Region-Of-Interest analyses using the Computational Anatomy Toolbox (CAT12). In Inter-group contrasts, these parameters were compared between patients and HC. Further, the D50 model was used to conduct subgroup-analyses, dividing patients by a) Phase of disease covered at the time of MRI-scan and b) individual overall disease aggressiveness. Finally, correlations between GM and D50 model-derived parameters were examined.Inter-group analyses revealed ALS-related cortical thinning compared to HC located mainly in frontotemporal regions and a decrease in GM volume in the left hippocampus and amygdala. A comparison of patients in different phases showed further cortical and subcortical GM atrophy along with disease progression. Correspondingly, regression analyses identified negative correlations between cortical thickness and individual disease covered. However, there were no differences in CT and subcortical GM between patients with low and high disease aggressiveness.By application of the D50 model, we identified correlations between cortical and subcortical GM atrophy and ALS-related functional disability, but not with disease aggressiveness. This qualifies CT and subcortical GM volume as biomarkers representing individual disease covered to monitor therapeutic interventions in ALS.

Background: Fear of falling (FOF) is common in Parkinson’s disease (PD) and associated with distinct gait changes. Here, we aimed to answer, how quantitative gait assessment can improve our understanding of FOF-related gait in hospitalized geriatric patients with PD. Methods: In this cross-sectional study of 79 patients with advanced PD, FOF was assessed with the Falls Efficacy Scale International (FES-I), and spatiotemporal gait parameters were recorded with a mobile gait analysis system with inertial measurement units at each foot while normal walking. In addition, demographic parameters, disease-specific motor (MDS-revised version of the Unified Parkinson’s Disease Rating Scale, Hoehn & Yahr), and non-motor (Non-motor Symptoms Questionnaire, Montreal Cognitive Assessment) scores were assessed. Results: According to the FES-I, 22.5% reported low, 28.7% moderate, and 47.5% high concerns about falling. Most concerns were reported when walking on a slippery surface, on an uneven surface, or up or down a slope. In the final regression model, previous falls, more depressive symptoms, use of walking aids, presence of freezing of gait, and lower walking speed explained 42% of the FES-I variance. Conclusion: Our study suggests that FOF is closely related to gait changes in hospitalized PD patients. Therefore, FOF needs special attention in the rehabilitation of these patients, and targeting distinct gait parameters under varying walking conditions might be a promising part of a multimodal treatment program in PD patients with FOF. The effect of these targeted interventions should be investigated in future trials.

Background: A cross-sectional observational study was designed to determine the impact of dizziness associated symptoms on the dizziness handicap inventory (DHI) in older adults (≥60 years).Methods: In total, 785 individuals referred to a multidisciplinary dizziness unit were assessed. Participants completed self-report questionnaires with general questions about symptoms of dizziness as well as the DHI. The DHI subscores (physical, functional, emotional) were calculated. Medical diagnoses were collected from the medical records of the patients. One-way MANOVA and networking analysis were used to analyze the impact of dizziness associated symptoms on dizziness handicap.Results: Most patients reported swaying dizziness (60.6%) and feeling of unsteadiness (59.8%) with substantial overlap between the types of dizziness. Most frequent dizziness associated symptoms were ear noise/tinnitus, visual problems, and nausea/vomiting. Network analysis revealed that visual disturbances, headache, and hearing impairment were associated with higher DHI and explained 12% of the DHI variance in the linear regression. In the one-way MANOVA visual problems and headache had an effect on all three DHI subscores, while hearing impairment was associated with the functional and emotional subscores of DHI.Conclusion: Distinct dizziness associated symptoms have substantial impact on dizziness handicap in older adults. A multifactorial assessment including these symptoms may assist in tailoring therapies to alleviate dizziness handicap in this group.

The pathogenesis of the fatal neurodegenerative condition amyotrophic lateral sclerosis (ALS) remains to be fully understood. Blood–brain barrier damage (BBBD) has been implicated as an exacerbating factor in several neurodegenerative conditions, including ALS. Therefore, this cross-sectional study used the novel D50 progression model to assess the clinical relevance of BBBD within a cohort of individuals with either ALS (n = 160) or ALS mimicking conditions (n = 31). Routine laboratory parameters in cerebrospinal fluid (CSF) and blood were measured, and the ratio of CSF to serum albumin levels (Qalb) was used as a proxy measure of BBBD. In the univariate analyses, Qalb levels correlated weakly with disease aggressiveness (as indicated by individual D50 values) and physical function (as measured by ALS Functional Rating Scale). However, after adjustment for cofactors in the elastic net regularization, only having limb-onset disease was associated with BBBD. The results reported here emphasize the clinical heterogeneity of ALS and the need for additional longitudinal and multi-modal studies to fully clarify the extent and effect of BBBD in ALS.

Background: Medication non-adherence is an important healthcare issue and a common problem. Many predictors of non-adherence have been found in different settings and cohorts.Objective: Evaluate the impact of the health locus of control (HLC) on unintentional/intentional non-adherence in primary care.Methods: In this observational, cross-sectional study, 188 patients (mean age 63.3 ± 14.9 years) were recruited from three primary care practices in Jena, Germany, over 4 months. The study assessed demographic data, self-reported adherence (German Stendal adherence to medication score, SAMS), HLC, and depression.Results: According to the SAMS total score, 44 (27.5%) were fully adherent, 93 (58.1%) were moderately non-adherent, and 23 (14.4%) were clinically significantly non-adherent. The most common reasons for non-adherence were forgetting to take the medication or lacking knowledge about the prescribed medication. Multiple linear regression revealed that adherence was good in people with external HLC and poor in internal HLC. In particular, intentional non-adherence was positively associated with internal HLC and negatively with fatalistic external HLC. Depression had a negative influence on both intentional and unintentional non-adherence.Conclusion: HLC is an independent predictor of medication non-adherence and is a promising target for interventions that enhance adherence.

Self-care and self-management are essential for well-being, especially in advancing age or chronic illness. To assess these complex behaviors, validated questionnaires are needed. The Appraisal of Self-Care Agency Scale-Revised (ASAS-R) is a self-report questionnaire to evaluate the actions people take to manage their health. This manuscript reports the psychometric properties of the German ASAS-R translation. After standardized translation, convergent validity was assessed with the Patient Activation Measure (PAM) controlling for sociodemographic and health factors. Internal consistency, descriptive statistics, and principal component analysis (PCA) are reported. We analyzed data of 215 community-dwelling German adults aged 51.6 ± 14.7 years with at least one chronic illness. Similar to the original ASAS-R, PCA revealed three factors, although item allocation differed. The ASAS-R showed good internal consistency overall and for each factor, although ceiling effects were present for some items. Convergent validity was good, and the ASAS-R was as a predictor for the PAM irrespective of other variables. As self-care is highly complex, we conclude that factor structure should be assessed for each dataset. Overall, the German ASAS-R is a valid instrument to measure self-care and self-management of chronic diseases that may enhance research on this fundamental health behavior in German-speaking countries.

Neuroinflammation significantly contributes to Amyotrophic Lateral Sclerosis (ALS) pathology. In lieu of this, reports of elevated chitinase levels in ALS are interesting, as they are established surrogate markers of a chronic inflammatory response. While post-mortem studies have indicated glial expression, the cellular sources for these moieties remain to be fully understood. Therefore, the objective of this pilot study was to examine whether the peripheral immune system also contributes to chitinase dysregulation in ALS. The temporal expression of CHIT1, CHI3L1, and CHI3L2 in non-polarized monocyte-derived macrophages (MoMas) from ALS patients and healthy controls (HCs) was examined. We demonstrate that while CHIT1 and CHI3L1 display similar temporal expression dynamics in both groups, profound between-group differences were noted for these targets at later time-points i.e., when cells were fully differentiated. CHIT1 and CHI3L1 expression were significantly higher in MoMas from ALS patients at both the transcriptomic and protein level, with CHI3L1 levels also being influenced by age. Conversely, CHI3L2 expression was not influenced by disease state, culture duration, or age. Here, we demonstrate for the first time, that in ALS, circulating immune cells have an intrinsically augmented potential for chitinase production that may propagate chronic neuroinflammation, and how the ageing immune system itself contributes to neurodegeneration.

Abstract Background Poor adherence is a major issue and is associated with increased morbidity, mortality, and immense costs for the healthcare system. Due to demographic changes, the burden of neurological diseases is increasing with a crucial exacerbation of the problem of nonadherence. However, comprehensive data on geriatric patients with neurological disorders do not exist to date. In this cross-sectional observational study we aim to identify disease-specific adherence-modulating factors in neurogeriatric patients. Methods Patients 60 years or older with neurological disorders will receive an assessment of adherence (Stendal Adherence with Medication Score) and a comprehensive geriatric assessment during their stay in the Department of Neurology or Geriatrics at the Jena University Hospital (baseline data). In addition disease specific data will be derived from medical records. After one and twelve months a telephone interview will be conducted to evaluate if and why changes of medication occurred (follow up data). Discussion This study aims to explore disease-specific patterns of nonadherence in elderly patients with neurological disorders and characteristics of information transfer between a specialized center, practicing neurologists, general practitioners, and the patients and their caregivers. This comprehensive data may help to develop and apply complex and disease-specific interventions to enhance adherence. Trial registration German Clinical Trials Register DRKS00016774. Registered 19.02.2019.

Abstract Background Parkinson’s disease (PD) is a progressive neurodegenerative disease characterized by motor and non-motor symptoms. There is increasing evidence that PD pathology is accompanied by an inflammatory response. This is highly relevant for understanding disease progression and the development of novel neuroprotective therapies. Objective Assessing potential dysregulation of a panel of inflammatory mediators in the peripheral blood mononuclear cells (PBMCs) and plasma of PD patients and in the context of clinical outcome metrics. Methods We performed a screening of selected cell-surface chemokine receptors and adhesion molecules in PBMCs from PD patients and age-matched healthy controls in a flow cytometry-based assay. ELISA was used to quantify VCAM1 levels in the plasma of PD patients. Lymphocytic chemotactic ability was assessed using a modified Boyden chamber assay. Results VLA4 expression was significantly downregulated on CD3+ T cells, CD56+ NK cells, and CD3+/CD56+ NK-T cells from PD patients; further, an increase of the soluble VLA4 ligand VCAM1 in patient plasma was noted. sVCAM1 in PD patients was even higher than reported for patients with multiple sclerosis, neuromyelitis optica, and rheumatoid arthritis. sVCAM1 levels correlated with the disease stage (Hoehn and Yahr scale) and motor impairment. Chemoattraction with SDF-1α revealed impaired motility of lymphocytes from PD patients relative to controls. Conclusion Our data provides evidence for a functional dysregulation of the sVCAM1-VLA4 axis in PD. Further studies evaluating the therapeutic potential of this axis are warranted.

Objectives Describing perceived limitations in everyday life, psychological burden and approval to easing of measures during the COVID-19 phases in elderly people with neurological disorders.Design Observational, prospective studySetting This is a monocentric study conducted at a university hospital in Germany.Participants Overall, 452 elderly people participated in the NeuroGerAdh study (DRKS00016774) and were interviewed by telephone between 18 March and 30 August 2020.Results Overall, 307 (67.9%) patients had relevant limitations in daily life due to the measures. These limitations significantly decreased during the pandemic phases. At the beginning of the pandemic, people complained about restricted social contacts and mobility, which were the most common reasons for perceived limitations in daily life. Later, since June 2020, wearing a mouth–nose mask had become the main reason for perceived limitations. In the elastic net regularisation, model higher perceived limitations in daily life were among others associated with younger age and earlier pandemic phases. Higher psychological burden was mainly associated with early pandemic phase, younger age and depression.The perceived psychological burden decreased as the pandemic phases passed, even though the reasons for psychological burden (anxiety or fear of infection, insecurity and concerns) did not remarkably change during the phases. From 16 June 2020, the patients were asked whether they approve the easing of measures. Sixty-seven of 136 patients (49.3%) approved and 55 (40.4%) did not. The common reasons for disapproval were fear of increased risk of infection and irresponsible behaviour of other people.Conclusion While limitations in daily life decreased during the study period, anxiety remains a common psychological burden in elderly sick people, and this needs special attention. Accordingly, most people do not approve easing of measures. Special strategies are needed to cope with changing measures during the COVID-19 pandemic.

Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that is characterized by a high heterogeneity in patients’ disease course. Patients with bulbar onset of symptoms (b-ALS) have a poorer prognosis than patients with limb onset (l-ALS). However, neuroimaging correlates of the assumed biological difference between b-ALS and l-ALS may have been obfuscated by patients’ diversity in the disease course. We conducted Voxel-Based-Morphometry (VBM) and Tract-Based-Spatial-Statistics (TBSS) in a group of 76 ALS patients without clinically relevant cognitive deficits. The subgroups of 26 b-ALS and 52 l-ALS patients did not differ in terms of disease Phase or disease aggressiveness according to the D50 progression model. VBM analyses showed widespread ALS-related changes in grey and white matter, that were more pronounced for b-ALS. TBSS analyses revealed that b-ALS was predominantly characterized by frontal fractional anisotropy decreases. This demonstrates a higher degree of neurodegenerative burden for the group of b-ALS patients in comparison to l-ALS. Correspondingly, higher bulbar symptom burden was associated with right-temporal and inferior-frontal grey matter density decreases as well as fractional anisotropy decreases in inter-hemispheric and long association tracts. Contrasts between patients in Phase I and Phase II further revealed that b-ALS was characterized by an early cortical pathology and showed a spread only outside primary motor regions to frontal and temporal areas. In contrast, l-ALS showed ongoing structural integrity loss within primary motor-regions until Phase II. We therefore provide a strong rationale to treat both onset types of disease separately in ALS studies.

Objective To develop multidimensional approaches for pain management, this study aimed to understand how PD patients cope with pain. Design Cross-sectional, cohort study. Setting Monocentric, inpatient, university hospital. Participants 52 patients with Parkinson’s disease (without dementia) analysed. Primary and secondary outcome measures Motor function, nonmotor symptoms, health-related quality of life (QoL), and the Coping Strategies Questionnaire were assessed. Elastic net regularization and multivariate analysis of variance (MANOVA) were used to study the association among coping, clinical parameters, and QoL. Results Most patients cope with pain through active cognitive (coping self-statements) and active behavioral strategies (increasing pain behaviors and increasing activity level). Active coping was associated with lower pain rating. Regarding QoL domains, active coping was associated with better physical functioning and better energy, whereas passive coping was associated with poorer emotional well-being. However, as demonstrated by MANOVA, the impact of coping factors (active and passive) on the Short Form 36 domains was negligible after correction for age, motor function, and depression. Conclusion Passive coping strategies are the most likely coping response of those with depressive symptoms, whereas active coping strategies are the most likely coping response to influence physical function. Although coping is associated with pain rating, the extent that pain coping responses can impact on QoL seems to be low.

Knowledge on prescribed medication is important for medication adherence. We determined the presence of cognitive impairment in neurological patients who report not to know reasons and dosages of their medication. Data from 350 patients were collected: sociodemographic data, German Stendal Adherence to Medication Score (SAMS), Montreal Cognitive Assessment (MoCA), and Beck Depression Inventory-II (BDI-II). Eighty-eight (29.0%) patients did not know the reasons for taking their prescribed medication and 83 (27.4%) did not know the doses. Sixty-three (20.8%) knew neither reasons nor dosage. The latter were characterized by higher nonadherence, higher number of prescribed medication per day, lower MoCA, higher BDI, and had more often a lower education level compared with patients who knew the reasons. The MANOVA revealed a significant multivariate effect for not knowing the reasons and not knowing the dosages of medication on MoCA and BDI. Significant univariate effects for not knowing reasons were found for depressive mood, but not for cognitive performance. Significant univariate effects for not knowing dosages were found for cognitive performance, but not for depressive mood. Inaccurate medication reporting is not solely associated with cognitive problems, but also with depression, which has to be taken into account in daily practice and research.

Cognitive deficits and fear of falling (FOF) can both influence gait patterns in Parkinson’s disease (PD). While cognitive deficits contribute to gait changes under dual-task (DT) conditions, it is unclear if FOF also influences changes to gait while performing a cognitive task. Here, we aimed to explore the association between FOF and DT costs in PD, we additionally describe associations between FOF, cognition, and gait parameters under single-task and DT. In 40 PD patients, motor symptoms (MDS-revised version of the Unified Parkinson’s Disease Rating Scale, Hoehn and Yahr), FOF (Falls Efficacy Scale International), and Montreal Cognitive Assessment (MoCA) were assessed. Spatiotemporal gait parameters were recorded with a validated mobile gait analysis system with inertial measurement units at each foot while patients walked in a 50 m hallway at their preferred speed under single-task and DT conditions. Under single-task conditions, stride length (β = 0.798) and spatial variability (β = 0.202) were associated with FOF (adjusted R2 = 0.19, p < 0.001) while the MoCA was only weakly associated with temporal variability (adjusted R2 = 0.05, p < 0.001). Under DT conditions, speed, stride length, and cadence decreased, while spatial variability, temporal variability, and stride duration increased with the largest effect size for speed. DT costs of stride length (β = 0.42) and age (β = 0.58) explained 18% of the MoCA variance. However, FOF was not associated with the DT costs of gait parameters. Gait difficulties in PD may exacerbate when cognitive tasks are added during walking. However, FOF does not appear to have a relevant effect on dual-task costs of gait.

Background: Nonadherence to medication is a common and serious issue in the treatment of patients with Parkinson's disease (PD). Among others, distinct nonmotor symptoms (NMS) were found to be associated with nonadherence in PD. Here, we aimed to confirm the association between NMS and adherence.Methods: In this observational study, the following data were collected: sociodemographic data, the German versions of the Movement Disorder Society-sponsored revision of the unified Parkinson's disease rating scale for motor function (MDS-UPDRS III), Hoehn and Yahr (H&Y) stage, levodopa equivalent daily dose (LEDD), Becks depression inventory II (BDI-II), nonmotor symptoms questionnaire (NMSQ), and the Stendal adherence to medication score (SAMS).Results: The final sample included 137 people with PD [54 (39.4%) females] with a mean age of 71.3 ± 8.2 years. According to SAMS, 10.9% of the patients were fully adherent, 73% were moderately nonadherent, and 16.1% showed clinically significant nonadherence. Nonadherence was associated with LEDD, BDI-II, education level, MDS-UPDRS III, and the NMSQ. The number of NMS was higher in nonadherent patients than in adherent patients. In the multiple stepwise regression analysis, the items 5 (constipation), 17 (anxiety), and 21 (falls) predicted nonadherence to medication. These NMSQ items also remained significant predictors for SAMS after correction for LEDD, MDS-UPDRS III, BDI-II, age, education level, gender, and disease duration.Conclusion: Our study, in principle, confirms the association between NMS burden and nonadherence in PD. However, in contrast to other clinical factors, the relevance of NMSQ in terms of nonadherence is low. More studies with larger sample sizes are necessary to explore the impact of distinct NMS on adherence.

Background: Detailed knowledge about nonadherence to medication could improve medical care in elderly patients. We aimed to explore patterns and reasons for nonadherence in people with Parkinson's disease (PD) aged 60 years and older.Methods: Detailed clinical data and adherence (German Stendal Adherence with Medication Score) were assessed in 230 patients with PD (without dementia). Descriptive statistics were used to study reasons for nonadherence in detail, and general linear models were used to study associations between clusters of nonadherence and clinical parameters.Results: Overall, 14.2% (n = 32) of the patients were fully adherent, 66.8% (n = 151) were moderately nonadherent, and 19.0% (n = 43) showed clinically meaningful nonadherence. In the multivariable analysis, nonadherence was associated with a lower education level, higher motor impairment in activities of daily living, higher number of medications per day, and motor complications of PD. Three clusters of nonadherence were observed: 59 (30.4%) patients reported intentional nonadherence by medication modification; in 72 (37.1%) patients, nonadherence was associated with forgetting to take medication; and 63 (32.5%) patients had poor knowledge about the prescribed medication. A lower education level was mainly associated with modification of medication and poorer knowledge about prescribed medication, but not with forgetting to take medication. Patients with motor complications, which frequently occur in those with advanced disease stages, tend to be intentionally nonadherent by modifying their prescribed medication. Increased motor problems and a higher total number of drugs per day were associated with less knowledge about the names, reasons, and dosages of their prescribed medication.Conclusions: Elderly patients with PD report many reasons for intentional and non-intentional nonadherence. Understanding the impact of clinical parameters on different patterns of nonadherence may facilitate tailoring of interventions and counseling to improve outcomes.

OBJECTIVE:This study aimed to explore the association between malnutrition, clinical parameters, and health-related quality of life in elderly hospitalized patients with Parkinson's disease (PD). METHODS:Cross-sectional study of 92 hospitalized elderly patients with PD (mean age 73.6 ± 6.7 years) without dementia. The Mini Nutritional Assessment (MNA) was used to evaluate nutritional status. Motor impairment and non-motor symptoms burden (Movement Disorder Society-sponsored revision of the Unified Parkinson's Disease Rating Scale [MDS-UPDRS], Non-Motor Symptoms Questionnaire, and Hoehn & Yahr staging), depression (Becks Depression Inventory-II), and health-related quality of life (PD quality of life Questionnaire-39) were assessed. RESULTS:Every second patient was malnourished or at risk of malnutrition. In the multivariable analysis, male gender, longer disease duration, higher Hoehn & Yahr and depression were associated with total MNA score. Besides non-motor symptoms and motor impairment, malnutrition was an independent predictor of poor health-related quality of life. In the multivariate analysis, malnutrition had a statistically significant effect on emotional well-being, mobility, social support, stigmatization, and cognition. The strongest association was found between malnutrition and emotional well-being. CONCLUSION:Elderly male persons with longer PD duration and higher disease stages are more likely to be malnourished or at risk for malnutrition. Malnutrition was mainly associated with poor emotional well-being, suggesting that treatment of depression and anxiety beside diet and physical activity can help improving nutrition status in these subjects. The MNA should not be used independent of other measures of cognition and depression in people with advanced PD.

Patients' vitamin intake is often not documented and is therefore not considered sufficiently in studies of prescribed medication in patients with amyotrophic lateral sclerosis (ALS). We aimed to determine the prevalence of vitamin use by participants in ALS clinical trials. Data about demographics, disease severity (ALS Functional Rating Scale) and concomitant medication were obtained from the Pooled Resource Open-Access ALS Clinical Trials Database, which contains records from more than 6000 ALS patients who participated in 23 phase II/III clinical trials. Information about vitamin intake for all study subjects was coded into major categories. Clinical data of vitamin users and nonusers were compared, and regression analysis was used to explore the associations among clinical parameters, vitamin use and two measures of disease progression. From the 40.996 available medication records from 6274 subjects, 7338 (17.9%) concerned vitamins. One or more vitamins were used by 3331 subjects (53.1%). Most common was vitamin E, vitamin C and multivitamins. Patients who did and did not take vitamins did not differ in terms of disease progression and ALS Functional Rating Scale score. Patients who took vitamins were younger, were more often female, had a shorter time between onset and diagnosis, had shorter disease duration and more frequently had limb-onset types. Disease progression rate and disease aggressiveness were not associated with vitamin use. Despite unclear evidence, the use of vitamins in ALS is common. However, rapid progression was not observed to be associated with vitamin use.

Background. Frequently used nonmotor scales do not cover all aspects of dysautonomia in Parkinson’s disease (PD). This study explores the association between autonomic symptoms and sicca symptoms with other nonmotor symptoms and health-related quality of life (QoL) in PD. Methods. Autonomic symptoms (Survey of Autonomic Symptoms, SASs), motor function (Movement Disorder Society-sponsored revision of the Unified Parkinson’s Disease Rating Scale III, MDS-UPDRS III), nonmotor symptoms (nonmotor symptoms questionnaire, NMS-Quest), and QoL (PD Questionnaire-39, PDQ-39) were analysed in 93 PD patients without dementia. Multivariable and multivariate analyses were performed to study the association between clinical parameters and PDQ-39 domains. Results. Among the autonomic symptoms, sicca symptoms (xerostomia and dry eyes) were the most commonly reported (69%), followed by sexual dysfunction in men, leaking of urine, vasomotor dysfunction, constipation, sudomotor dysfunction, and orthostatic symptoms. The autonomic symptom burden (SAS total) correlated with the NMS-Quest and Hoehn and Yahr stage, but not with age, levodopa equivalent daily dose, disease duration, and the MDS-UPDRS III. The SAS total score was an independent predictor of the PDQ-39 summary index and mainly affected the PDQ-39 cognition and emotional well-being domains. Sicca symptoms were not associated with age, MDS-UPDRS III, disease duration, Hoehn and Yahr stage, and levodopa equivalent daily dose but aggravated the PDQ-39 domains: cognition, emotional well-being, bodily discomfort, and mobility. Sicca symptoms frequently occur together with other nonmotor symptoms, namely, urine urgency, orthostatic problems, and concentration problems. Overall, 75% of the subjects took at least one drug that can cause sicca symptoms (anti-PD medication, antidepressant drugs, antihypertensive drugs, antipsychotic drugs, antimuscarinic drugs, and analgesic drugs). Conclusion. Sicca symptoms are common in PD and negatively influence QoL. The observed association between sicca symptoms and other nonmotor symptoms provides further preliminary evidence for the growing recognition of different nonmotor clusters in PD.

Background. Medication is often changed after hospital discharge in people with Parkinson’s disease (PD). Objective. This observational study aimed to describe changes in PD medication after discharge and explore their association with self-reported adherence and clinical parameters. Methods. During hospitalisation sociodemographic characteristics, the Movement Disorder Society-sponsored revision of the Unified PD Rating Scale for motor function (MDS-UPDRS III), Hoehn and Yahr (H&Y) stage, levodopa equivalent daily dose (LEDD), Beck Depression Inventory II (BDI-II) score, Montreal Cognitive Assessment (MoCA) score, nonmotor symptoms questionnaire (NMSQ), and Stendal Adherence to Medication Score (SAMS) were collected in 125 people with PD. A semistructured interview was conducted 1 month after discharge to determine the extent and reasons for medication changes. Results. Thirty-eight patients (30.4%) changed their PD medication after discharge. Most changes (20.8%) were performed by physicians while 9.6% of patients changed their medication by themselves due to side effects, missing effect of the medication, missing knowledge about the indication, running out of medication, or nonspecific reason. This led to decreased doses while changes by physicians resulted in both increase and decrease of doses as well as new drug prescription. Patients without changes, patients with changes performed by them, and patients with changes performed by physicians did not differ in age, disease duration, MDS-UPDRS III, LEDD, NMSQ, MoCA, BDI-II, gender, marital status, or education. However, patients who themselves made the changes were more likely to be nonadherent according to baseline SAMS. Patients who made changes after discharge had higher SAMS modification and forgetting subscores than patients without changes or with changes made by physicians. Conclusion. Both intended and unintended nonadherence occur in patients who change medication after discharge. The use of an adherence questionnaire during inpatient treatment may help detect patients with higher risk of changing medication after discharge.

Therapeutic management and research in Amyotrophic Laterals Sclerosis (ALS) have been limited by the substantial heterogeneity in progression and anatomical spread that are endemic of the disease. Neuroimaging biomarkers represent powerful additions to the current monitoring repertoire but have yielded inconsistent associations with clinical scores like the ALS functional rating scale. The D50 disease progression model was developed to address limitations with clinical indices and the difficulty obtaining longitudinal data in ALS. It yields overall disease aggressiveness as time taken to reach halved functionality (D50); individual disease covered in distinct phases; and calculated functional state and calculated functional loss as acute descriptors of local disease activity. It greatly reduces the noise of the ALS functional rating scale and allows the comparison of highly heterogeneous disease and progression subtypes. In this study, we performed Voxel-Based Morphometry for 85 patients with ALS (60.1 ± 11.5 years, 36 female) and 62 healthy controls. Group-wise comparisons were performed separately for gray matter and white matter using ANCOVA testing with threshold-free cluster enhancement. ALS-related widespread gray and white matter density decreases were observed in the bilateral frontal and temporal lobes (p