Tailored interventions to improve adherence to medication in elderly patients with Parkinson's disease: a study protocol for a randomized controlled trial (AdhCare).

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.

Data on medication adherence in adults with neurological disorders: The NeuroGerAd study.

Nonadherence to medication is a common issue that goes along with increased morbidity and mortality and immense health care costs. To improve medication adherence and outcome in ill people, their reasons of not taking their prescribed medication must be known. Here a dataset is presented based on the longitudinal observational NeuroGerAd study in adults with neurological disorders (N = 910). The dataset contains demographic background variables as well as measures of adherence, medication changes after hospital discharge, comprehensive geriatric assessments, personality, patient-physician relationship, and health-related quality of life. As such, the dataset offers unique opportunities to enable a plethora of analyses on personal, social, and institutional factors influencing medication adherence.

Validation and Psychometric Analysis of the German Translation of the Appraisal of Self-Care Agency Scale-Revised.

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.

Impact of Depression, Resilience, and Locus of Control on Adjustment of Health-Related Expectations in Aging Individuals With Chronic Illness.

Objectives: Quality 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). Methods: A 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. Results: A 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. Conclusion: Older 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.

Expectations and behaviour of older adults with neurological disorders regarding general practitioner consultations: an observational study.

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.

Impact of subthreshold depression on health-related quality of life in patients with Parkinson's disease based on cognitive status.

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 (< 21)]. In PDQ-39 SI, there was a significant effect on depression level. In patients with higher MOCA score, STD was associated with worse PDQ-39 domains emotional well-being and cognition, whereas in patients with lower MOCA score, STD had no significant effect on PDQ-39 SI or its subdomains. CONCLUSION: In PD patients, QoL is significantly affected by STD, and thus, more attention in medical care should be focused on treating STD. However, the impact is only observable in PD patients with normal cognitive function. STD patients show more reduced QoL than non-depressed patients, indicating that STD should be treated as a transition zone between normal mood and depression.

Changes of perceptions and behaviours during the phases of COVID-19 pandemic in German elderly people with neurological disorders: an observational study using telephone interviews.

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 study SETTING: 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.

Knowledge, Attitudes, Practices, and Burden During the COVID-19 Pandemic in People with Parkinson's Disease in Germany.

Background: Adherence to measures that have been adopted during the COVID-19 pandemic is crucial to control the spread of the coronavirus. Methods: Semi-structured telephone interviews were performed with 99 patients with Parkinson's disease (PD) and 21 controls to explore knowledge, attitudes, practices, and burden in order to elucidate nonadherence to preventive measures. Results: The majority of patients understood the preventive measures and felt sufficiently informed. Analysis of qualitative answers, however, showed that about 30% of patients had an insufficient level of knowledge, which was not associated with educational level, cognitive disorders, or depression. Changes in behaviour were reported by 73 patients (99% performed at least one specific preventive behavior, and 86.9% have reduced social contacts and stayed home). A closer analysis of qualitative answers showed that 27.3% of patients continued to meet relatives face-to-face almost daily. Anxiety and worries about the current situation were reported by 58.6% of patients; 31.3% complained about a decrease in their mobility since the beginning of the restrictions, mainly because of worsening of PD and because regular therapies (e.g., physiotherapy) were canceled. Conclusions: About 30% of PD patients are nonadherent to preventive measures. Use of simple dichotomous questions overestimates adherence to preventive measures in patients with PD.

Current and Desired Quality of Life in People with Parkinson's Disease: the Calman Gap Increases with Depression.

Hopes and expectations often differ from current experiences. This so-called Calman gap influences quality of life (QoL). We investigated this gap in 77 elderly patients with Parkinson's disease (PD), 25 patients with epilepsy, and 39 age-matched healthy older adults using a novel QoL questionnaire, where current and desired states were marked on a visual analogue scale. We studied the relationships between (1) epidemiological factors, (2) current and desired QoL, as well as the difference between the latter two. Current QoL was determined by depression, education level, living situation, and condition (PD, epilepsy, control). In contrast, desired QoL was essentially determined by the presence of a disease (condition), education level, and age, but not by depression. In particular, the presence of PD, lower education level, and higher age was correlated with lower expectations. In patients with PD, the gap between the current and desired QoL was largest for pain and physical functions. Accordingly, the significant effects of depression were observed only for mean current QoL, but not for desired QoL. Therefore, depression mainly influences current but not desired QoL in patients with PD. Depressed patients with PD had significantly worse QoL than PD patients without depression, although they both had almost the same desired QoL and hence, depressed PD patients had a larger Calman gap between current and desired QoL.

The impairment of small nerve fibers in severe sepsis and septic shock.

BACKGROUND: A decrease of small nerve fibers in skin biopsies during the course of critical illness has been demonstrated recently. However, the diagnostic use of skin biopsies in sepsis and its time course is not known. METHODS: Patients (n=32) with severe sepsis or septic shock were examined using skin biopsies, neurological examination, nerve conduction studies, and sympathetic skin response in the first week after onset of sepsis, 2 weeks and 4 months later and compared to gender- and age-matched healthy controls. RESULTS: Skin biopsies at the ankle and thigh revealed a significant decrease of intraepidermal nerve fiber density (IENFD) during the first week of sepsis and 2 weeks later. All patients developed critical illness polyneuropathy (CIP) according to electrophysiological criteria and 11 showed IENFD values lower than the 0.05 quantile. Four patients were biopsied after 4 months and still showed decreased IENFD. Results of nerve conduction studies and IENFD did considerably change over time. No differences for survival time between patients with IEFND lower and larger than 3.5 fibers/mm were found. CONCLUSIONS: Skin biopsy is able to detect an impairment of small sensory nerve fibers early in the course of sepsis. However, it may not be suited as a prognostic parameter for survival. TRIAL REGISTRATION: German Clinical Trials Register, DRKS-ID: DRKS00000642, 12/17/2010.

Impairment of small somatic and autonomic nerve fibres in intensive care unit patients with severe sepsis and critical illness polyneuropathy--a single center controlled observational study.

BACKGROUND: Axonal damage in large myelinated nerve fibres occurs in about 70% of patients with severe sepsis, known as critical illness polyneuropathy and contributes significantly to an increased short- and long-term morbidity and mortality in this population. Among other pathophysiological mechanisms, autonomic dysregulation, characterized by high concentrations of circulating catecholamines in the presence of impaired sympathetic modulation of heart and vessels have been discussed. We hypothesize that autonomic small fibre neuropathy play an important role in autonomic failure. METHODS/DESIGN: Single center, non-randomized, controlled, observational study. Skin biopsies of patients with severe sepsis and/or septic shock are compared with those of age-matched controls. In order to assess impairment of small nerve fibres, skin biopsies are taken at onset of severe sepsis, and two and 16 weeks later. Intraepidermal nerve fibre densities are histologically analyzed using anti protein gene product (PGP) 9.5 immunostaining. In addition, standardized clinical examinations, as Medical Research Council (MRC) scores of muscle strength, Rankin scores, and standardized nerve conduction studies of the right median nerve, the right tibial nerve, the left fibular nerve, and both sural nerves are performed, to identify critical illness polyneuropathy and to neurophysiologically quantify the damage of large nerve fibres. DISCUSSION: The study will allow to describe the frequency of small fibre neuropathy in patients with severe sepsis up to four months after onset of severe sepsis and to evaluate its relationship to critical illness polyneuropathy. TRIAL REGISTRATION: The trial has been registered to the German Clinical Trials Register. The trial registration number is DRKS-ID: DRKS00000642.

Muscle ultrasound for early assessment of critical illness neuromyopathy in severe sepsis.

INTRODUCTION: Muscle ultrasound is emerging as a promising tool in the diagnosis of neuromuscular diseases. The current observational study evaluates the usefulness of muscle ultrasound in patients with severe sepsis for assessment of critical illness polyneuropathy and myopathy (CINM) in the intensive care unit. METHODS: 28 patients with either septic shock or severe sepsis underwent clinical neurological examinations, muscle ultrasound, and nerve conduction studies on days 4 and 14 after onset of sepsis. 26 healthy controls of comparable age underwent clinical neurological evaluation and muscle ultrasound only. RESULTS: 26 of the 28 patients exhibited classic electrophysiological characteristics of CINM, and all showed typical clinical signs. Ultrasonic echogenicity of muscles was graded semiquantitatively and fasciculations were evaluated in muscles of proximal and distal arms and legs. 75% of patients showed a mean echotexture greater than 1.5, which was the maximal value found in the control group. A significant difference in mean muscle echotexture between patients and controls was found at day 4 and day 14 (both p < 0.001). In addition, from day 4 to day 14, the mean grades of muscle echotexture increased in the patient group, although the values did not reach significance levels (p = 0.085). Controls revealed the lowest number of fasciculations. In the patients group, fasciculations were detected in more muscular regions (lower and upper arm and leg) in comparison to controls (p = 0.08 at day 4 and p = 0.002 at day 14). CONCLUSIONS: Muscle ultrasound represents an easily applicable, non-invasive diagnostic tool which adds to neurophysiological testing information regarding morphological changes of muscles early in the course of sepsis. Muscle ultrasound could be useful for screening purposes prior to subjecting patients to more invasive techniques such as electromyography and/or muscle biopsy. TRIAL REGISTRATION: German Clinical Trials Register, DRKS-ID: DRKS00000642.

Effects of temporary functional deafferentation on the brain, sensation, and behavior of stroke patients.

Following stroke, many patients suffer from chronic motor impairment and reduced somatosensation in the stroke-affected body parts. Recent experimental studies suggest that temporary functional deafferentation (TFD) of parts of the stroke-affected upper limb or of the less-affected contralateral limb might improve the sensorimotor capacity of the stroke-affected hand. The present study sought evidence of cortical reorganization and related sensory and motor improvements following pharmacologically induced TFD of the stroke-affected forearm. Examination was performed during 2 d of Constraint-Induced Movement Therapy. Thirty-six human patients were deafferented on the stroke-affected forearm by an anesthetic cream (containing lidocaine and prilocaine) on one of the 2 d, and a placebo cream was applied on the other. The order of TFD and placebo treatment was counterbalanced across patients. Somatosensory and motor performance were assessed using a Grating orienting task and a Shape-sorter-drum task, and with somatosensory-evoked magnetic fields. Evoked magnetic fields showed significant pre- to postevaluation magnitude increases in response to tactile stimulation of the thumb of the stroke-affected hand during TFD but not following placebo treatment. We also observed a rapid extension of the distance between cortical representations of the stroke-affected thumb and little finger following TFD but not following placebo treatment. Moreover, somatosensory and motor performance of the stroke-affected hand was significantly enhanced during TFD but not during placebo treatment. Thus, pharmacologically induced TFD of a stroke-affected forearm might improve the somatosensory and motor functions of the stroke-affected upper limb, accompanied by cortical plasticity.

Deafferentation of the affected arm: a method to improve rehabilitation?

BACKGROUND AND PURPOSE: Reduced somatosensation is a common impairment after stroke. This somatosensory deficit is known to be a reliable predictor of poor rehabilitation outcome. Several methods of physical therapy have addressed this problem, but with only moderate success. Here, we used a new neural plasticity-based approach, ie, a simple, inexpensive, pharmacologically induced temporary functional deafferentation (TFD) of the forearm to investigate whether TFD might result in beneficial effects on the somatosensory sensibility and motor capacity of the stroke-affected hand. METHODS: Examination was performed over 2 consecutive days of an efficient rehabilitation program for stroke patients referred to as constraint-induced movement therapy. Patients were deafferented on one of these days but not on the other (placebo session). The order of deafferentation and nondeafferentation was counterbalanced across patients. TFD of the stroke-affected forearm was realized using an anesthetic cream. Somatosensory abilities were assessed by a Grating orienting task, and a shape-sorter drum task was used to test motor performance. Both tests were performed each day before and after the constraint-induced movement therapy training session. RESULTS: We found significantly better outcomes for Grating orienting task and shape-sorter drum task after TFD on the forearm as compared to placebo, indicating increased somatosensory abilities and motor performance in stroke patients using the simple TFD procedure. CONCLUSIONS: The improvement was achieved during the course of one of the best established poststroke rehabilitation programs, suggesting that TFD on the more affected forearm might become an efficient additional tool in stroke rehabilitation.