[Users and utilization of support groups among caregivers of dementia patients : Results of a naturalistic observational study]. / Nutzer und Nutzung von Selbsthilfegruppen für pflegende Angehörige von Alzheimer-Patienten : Ergebnisse einer naturalistischen Beobachtungsstudie.

BACKGROUND: Caring for patients with Alzheimer's disease (AD) is frequently associated with an increased burden for the caregiving relatives (CG). While therapeutic options and low threshold assistance offers for a reduction of the burden have become well established, data on the utilization of support groups (SG) are still lacking. MATERIAL AND METHODS: In the outpatient neurological and psychiatric routine treatment, AD patients were enrolled with their accompanying CG in a 2-stage study. Firstly, each patient was clinically documented by the treating physician and each CG was asked to fill out a questionnaire on the current care situation at the patient's home. In stage two, each CG was additionally assessed with a standardized interview and screened for depression with the depression screening questionnaire (DSQ). Each CG also rated the current CG burden, life satisfaction and health condition on a visual analogue scale (VAS). RESULTS: Overall, 14.8 % of CGs attended an SG. The CGs who visited an SG showed a tendency to report a severe CG burden more often than CGs who did not (71.9 % vs. 56.3 %, p = 0.060) and more frequently a lower satisfaction with life (33.3 vs. 17.2 %, p < 0.01). They also reported higher rates of verbal and physical aggression by the patients (51.5 % vs. 34.0 %, p < 0.05 and 39.4 % vs. 12.7 %, p < 0.01, respectively) and appraised their health condition to be lower (VAS score 66.0 % vs. 54.0, p < 0.01). Depressive disorders occurred in both groups at similar rates (54.1 % and 42.1 %, p = 0.317). CONCLUSION: The data suggest that the decision to join an SG is influenced more by behavioral and non-cognitive symptoms of the AD rather than its duration or severity.

Verbal memory declines more in female patients with Parkinson's disease: the importance of gender-corrected normative data.

BACKGROUND: Data on gender-specific profiles of cognitive functions in patients with Parkinson's disease (PD) are rare and inconsistent, and possible disease-confounding factors have been insufficiently considered. METHOD: The LANDSCAPE study on cognition in PD enrolled 656 PD patients (267 without cognitive impairment, 66% male; 292 with mild cognitive impairment, 69% male; 97 with PD dementia, 69% male). Raw values and age-, education-, and gender-corrected Z scores of a neuropsychological test battery (CERAD-Plus) were compared between genders. Motor symptoms, disease duration, l-dopa equivalent daily dose, depression - and additionally age and education for the raw value analysis - were taken as covariates. RESULTS: Raw-score analysis replicated results of previous studies in that female PD patients were superior in verbal memory (word list learning, p = 0.02; recall, p = 0.03), while men outperformed women in visuoconstruction (p = 0.002) and figural memory (p = 0.005). In contrast, gender-corrected Z scores showed that men were superior in verbal memory (word list learning, p = 0.02; recall, p = 0.02; recognition, p = 0.04), while no difference was found for visuospatial tests. This picture could be observed both in the overall analysis of PD patients as well as in a differentiated group analysis. CONCLUSIONS: Normative data corrected for gender and other sociodemographic variables are relevant, since they may elucidate a markedly different cognitive profile compared to raw scores. Our study also suggests that verbal memory decline is stronger in women than in men with PD. Future studies are needed to replicate these findings, examine the progression of gender-specific cognitive decline in PD and define different underlying mechanisms of this dysfunction.

Estimating the prevalence of Parkinson's disease (PD) and proportions of patients with associated dementia and depression among the older adults based on secondary claims data.

OBJECTIVES: While the epidemiology of Parkinson's disease (PD) has been extensively studied, data on the prevalence of PD among the older adults in Germany are scarce, based on small samples, and limited to primary data designs. This study estimated the PD prevalence among the older adults in Germany in 2006 using secondary data. METHODS: We included 815,573 health insurance members aged ≥65 years from all regions in Germany. PD was identified in case of at least one inpatient or outpatient diagnosis. An outpatient diagnosis had to be confirmed by either a subsequent diagnosis or an antiparkinsonian drug within 12 months. PD was also assumed if a first prescription was confirmed by a diagnosis within 12 months. Cases were checked for a diagnosis of dementia or depression. RESULTS: The standardized prevalence of PD was 1680 (95% confidence interval (CI): 1644-1716) cases per 100,000 persons. The prevalence increased with age and peaked in the age group of ≥90 years (4633 cases; 95% CI: 4227-5068) with higher rates in men (1729; 95% CI: 1684-1776) than in women (1644; 95% CI: 1593-1697). Dementia and depression occurred in 26.6% (95% CI: 25.8-27.5) and 32.6 (95% CI: 31.7-33.5) of PD cases, respectively. CONCLUSIONS: The age-related increase of PD prevalence and the age-specific prevalence estimates are in line with other European studies, stressing the public health relevance related to PD. In addition to the minimization of biases that might occur in primary data studies, further strengths of our findings are the large underlying sample size and the coverage of Germany.

[Care-Dependency in Parkinson's Disease: More Frequent than Assumed?]. / Pflegebedürftigkeit bei Morbus Parkinson - zu selten (an-)erkannt?

AIMS: Parkinson's disease (PD) increases the risk of care-dependency (CDP). While motor functions worsen continuously, the assignment of patients to CDP occurs categorically. It is unknown how many patients are already sufficiently severely impaired to be categorised as CDP yet do not have an officially acknowledged level of CDP. METHODS: A random sample of 1,449 PD outpatients was clinically characterised by office-based neurologists, including impairments of activities of daily living (ADL with the Unified Parkinson's Disease Rating scale (UPDRS subscale II) as well as regarding the presence of dementia according to DSM-IV criteria and the Mini-Mental State Exam (MMSE). Depression was screened for with the Montgomery-Asberg Depression Rating Scale (MADRS). For each patient the officially acknowledged level of CDP was documented; for patients without official CDP level, the clinician appraised whether the patient was care-dependent anyhow. RESULTS: 266 patients (18.3%) were officially acknowledged as care-dependent, while n=121 patients (8.5%) were not, yet were appraised to be care-dependent according to the clinician. Compared to non-CDP patients, they differed on every measure considered. Compared to patients with an official CDP, their PD duration was significantly shorter (6.0 vs. 8.0 years, p<0.01) and they were less severely impaired in ADL (13.3 vs. 15.5, p<0.01). They did not differ regarding the rates of dementia (52.9 vs. 44.9%, p=0.203) or depression according to the MADRS (13.1 vs. 13.1, p=0.989). CONCLUSIONS: ADL impairments are the most important predictor for CDP while dementia and depression are not considered despite the impairments that are additionally caused by them.

[The prevalence of Parkinson's disease, associated dementia, and depression in Dresden]. / Die epidemiologie des idiopathischen Parkinson-syndroms und assoziierter demenz und depression in Dresden.

BACKGROUND: Parkinson's disease (PD) is frequently compounded by dementia and depression. Yet local total estimates on the prevalence of PD with dementia/depression are still lacking. These are socioeconomically important, especially for the eastern federal states in Germany due to the demographic structures. METHODS: We conducted a two-staged total estimation in the area of Dresden. First, all local office-based neurologists, hospitals and retirement homes were asked to list their patients/residents with PD on a single study day. Then a random sample of patients/home residents was neuropsycholoigcally examined, including the Mini-mental-state exam and the Montgomery-Asberg Depression rating scale. Dementia was diagnosed according to DSM-IV criteria. RESULTS: Overall, 886 PD cases (95 % CI: 809 - 926) were estimated, of which 252 (95 % CI: 226 - 279) suffered from dementia and 216 (95 % CI: 191 - 242) from depression. Dementia rates increased by age with 13.8 % (≤ 65 years) to 40.2 % (≥ 76 years). Depression rates ranged from 23.3 % to 28.0 %. Overall, 20.6 % of all ambulatory treated PD patients and 85.7 % of all home residents with PD had dementia. CONCLUSION: The prevalence of PD in Dresden dovetails with previous reported estimates. Dementia and depression are frequent complications in outpatients as well as home residents with PD.

[Impulsive-compulsive behaviours in a German Parkinson's disease outpatient sample]. / Impulsiv-zwanghafte verhaltensstörungen in einer deutschen stichprobe ambulant versorgter Parkinson-patienten.

BACKGROUND: Impulsive-compulsive behaviours (ICBs) are frequent complications of Parkinson's disease (PD), associated with treatment by dopamine agonists (DAs). These include impulse control disorders (ICDs), repetitive behaviour (RB) and the dopamine-dysregulation syndrome (DDS). METHODS: A subsample of 72 patients of a large longitudinal study (n = 739) was screened with the Questionnaire for Impulsive-Compulsive Disorders in Parkinson's disease (QUIP). Results were associated with socio-demographic, clinical and neuropsychological parameters. RESULTS: A large proportion of the sample reported ICBs (60%), RBs were most frequent (47 %). Patients with ICBs consumed higher doses of DAs (343 ± 177 mg vs. 390 ± 153 mg; p < 0.01). Pramipexole was associated with RB but not ICDs (273 ± 225 mg and 53 ± 106 mg vs. 151 ± 209 mg in patients without ICB). Patients with ICDs reported more dyskinesias (UPDRS IV: 1.78 ± 1.6 vs. 0.55 ± 1.1 points; p = 0.012) and patients with multiple ICBs a longer duration of PD (9.3 ± 5.0 vs. 6.2 ± 4.0 years; p = 0.026) and worse quality of life (PDQ39: 29.9 ± 13.8 vs. 20.3 ± 13.4 points; p = 0.036) compared to patients without any ICB. CONCLUSIONS: ICBs are frequent even in outpatients with moderate duration and severity of PD and associated with DA dose. Because of possible serious psychosocial consequences, detecting and managing them is of high importance.

Omalizumab versus 'usual care': results from a naturalistic longitudinal study in routine care.

BACKGROUND: It is unclear how far the superior efficacy of omalizumab, established in randomized controlled clinical trials of patients with severe allergic asthma (SAA), translates into routine practice and when compared to matched controls. METHODS: New-onset omalizumab-treated (OT) patients with SAA (n = 53) were compared to a matched control group of usual-care (UC) patients (n = 53). Treatment and procedures were naturalistic. Subsequent to a baseline assessment, patients were followed up over at least 6 months with at least two follow-up assessments. Primary clinical outcomes were the number of asthma attacks, persistence of asthma symptoms and degree of control [asthma control test (ACT), Global Initiative for Asthma]. Secondary outcome criteria were quality of life (Euro-Qol 5D) and number of medications. For each outcome we compared within-group effects from baseline to 6-month follow-up as well as between-group effects. RESULTS: OT patients showed significant improvements in number [effect size (ES) = 0.03] and frequency (ES = 0.04) of asthma attacks as well as asthma control (ES = 0.09), whereas controls revealed no significant improvements in these measures. Further improvements in the OT group were found for 'perceived control always' (ACT, p = 0.006), no impairment (ACT, p = 0.02), reduction of sickness days (p = 0.002) and number of medications needed (p = 0.001). CONCLUSIONS: Substantial beneficial effects of omalizumab, similar to those observed in controlled trials and after marketing studies, were confirmed, particularly with regard to the reduction of asthma attacks, persistence of symptoms, asthma control and reduction of concomitant asthma medications. This study provides a tougher test and generalizable evidence for the effectiveness of omalizumab in routine care.

[Dementia and depression determine care dependency in Parkinson's disease: analysis of 1,449 outpatients receiving nursing care in Germany]. / Demenz und Depression determinieren Pflegebedürftigkeit bei M. Parkinson : Untersuchung an 1449 Patienten im ambulanten Versorgungssektor in Deutschland.

BACKGROUND: Parkinson's disease (PD) is frequently accompanied by dementia or depression which can aggravate the clinical picture of the disease and increase the risk of care dependency (CD). Little is known about the associations between PD, these neuropsychiatric comorbidities and CD in outpatients. PATIENTS AND METHODS: A nationwide sample of outpatients (n=1,449) was examined by office-based neurologists (n=315) comprising the documentation of the general, neurological status and the degree of CD. The dementia status was clinically rated according to the established DSM-IV criteria. Depression was screened with the Montgomery-Asberg Depression Rating Scale (MADRS). RESULTS: Overall, 18.3% of all patients were care dependent. Even after adjustment for PD severity, patients with depression (OR=2.8; 95% CI 1.8-4.3), dementia (OR=2.7; 95% CI 1.8-4.1) or both (OR=3.9; 95% CI 2.5-60,0) were at higher risk for CD than patients without dementia or depression. Patients aged ≥76 years were fourfold more likely to be care dependent than patients aged ≤65 years (OR=3.5; 95% CI 2.3-5.5). Across all age groups, patients with depression featured the highest increments (from 11.9 to 42.0%). CONCLUSION: The risk for CD is substantially elevated in outpatients with PD when further neuropsychiatric symptoms are present. The data suggest that depression contributes equally to disability as does dementia.

[The German Study on the Epidemiology of Parkinson's Disease with Dementia (GEPAD): more than Parkinson]. / Die "German study on the epidemiology of Parkinson's disease with dementia" (GEPAD): mehr als nur Parkinson.

UNLABELLED: It is unknown, how frequently Parkinson's disease (PD) is complicated by dementia, depression and other neuropsychiatric conditions. An epidemiologic characterisation of the situation in specialised neurologic settings is lacking. The Geman Study on the Epidemiology of Parkinson's Disease with Dementia (GEPAD) isa national representative epidemiological study of n=1449 PD patients in n=315 office-based neurological settings, designed to estimate the prevalence of dementia, depression and other neuropsychiatric conditions in patients with PD of all stages by using standardized clinical assessments. RESULTS: 28.6% met DSM-IV criteria for dementia. 33.6% met criteria for depression and 61% additionally had other clinically significant psychopathological syndromes. Only 29.4% had no neuropsychiatric conditions. GEPAD reveals for the first time comprehensively that the neuropsychiatric burden of PD patients in all stages and even early stages is considerable, posing challenging questions for research and clinical management.

Quality of life in a German cohort of Parkinson's patients assessed with three different measures.

BACKGROUND: Parkinson's disease (PD) is characterized by severe motor and non-motor symptoms reducing patients' quality of life (QoL). Instruments have been well established for QoL assessments in PD, including the EuroQol (EQ-5D), the Parkinson's disease questionnaire (PDQ-39), or rather uncommon, like the WHOQOL-100. So far, the impact of variables has been investigated for each of these measures separately in different study populations, limiting the comparability of the results. Thus, this study compared the EQ-5D, PDQ-39, and the WHOQOL-100 (with its short-form WHOQOL-BREF) in the same study population. METHODS: Seventy-five PD outpatients were assessed in a prospective study, including disease severity according to Hoehn and Yahr stage (HY) and Unified Parkinson Disease Rating Scale (UPDRS). The Geriatric Depression Scale (GDS-15) screened for depression. RESULTS: Decreased QoL was found with all three instruments. In multivariate models, sex and treatment complications had an impact on QoL according to all three measures, while duration of PD and HY was not associated with QoL in any of them. Depression was relevant for the WHOQOL-100/WHOQOL-BREF and the PDQ-39, but not for the EQ-5D. The total variances explained by the WHOQOL-100, WHOQOL-BREF, PDQ-39, and the EQ-5D were 0.27, 0.34, 0.70, and 0.50, respectively. CONCLUSIONS: The associations between clinical aspects of PD and QoL vary substantially among all three measures. Importantly, depression as a frequent comorbidity in PD is underestimated by the EQ-5D, but not by the PDQ-39 and the WHOQOL-100/WHOQOL-BREF. In turn, motor impairments are underestimated by the latter and associated strongest with QoL in the EQ-5D.

Assessing health-related quality of life in patients with Parkinson's disease in a prospective longitudinal study.

OBJECTIVE: To prospectively assess the health-related quality of life (HrQoL) in Parkinson's disease (PD) during 12 months. METHODS: HrQoL was assessed in 145 PD patients using the PD-specific PDQ-39, PDQL and the generic EQ-5D. In addition, clinical rating-scales were used. RESULTS: All scales showed a pronounced effect of PD. In comparison to an age-matched population the EQ-5D was considerably affected. In comparison to baseline, however, there was no significant change in the generic scale but a significant change in the sum-score of disease-specific HrQoL-scales. CONCLUSIONS: Only disease-specific scales were sensitive to change. Further studies are necessary to evaluate the time-dependent change in HrQoL.

Alzheimer's Disease: Differences of Transdermal versus Oral Treatment on Caregiving Time.

BACKGROUND: Data on indirect effects of dementia treatment on caregiver burden obtained from naturalistic studies are still lacking. We explored differences between patients with oral and transdermal application of acetylcholine esterase inhibitors regarding caregiver's time burden and psychopathology. METHODS: A cross-sectional naturalistic cohort study of 403 patients in outpatient care with three treatment groups (none, oral, and transdermal) was conducted. Assessments included a standardized clinical burden questionnaire and a standardized caregiver interview. RESULTS: Any treatment was associated with lower burden in most measures. Transdermal treatment was superior regarding (1) administration time (p < 0.001); (2) rates of administration problems (p = 0.031); (3) burden in activities of daily living (p = 0.008), and (4) caregiver anxiety (OR 0.25; 95% CI 0.05-0.99). Caregivers did not report better quality of life regarding mental/physical health. Physicians' and caregivers' ratings of patients' improvements were not associated (κ = 0.01-0.06). CONCLUSIONS: Benefits associated with transdermal treatment do not translate into a better 'generic quality of life' of the caregiver. The substantially different perceptions of patients' improvements need to be considered in future studies.

Depression and care-dependency in Parkinson's disease: results from a nationwide study of 1449 outpatients.

Parkinson's disease (PD) is frequently compounded by neuropsychiatric complications, increasing disability. The combined effect of motor and mental status on care-dependency in PD outpatients is not well characterized. We conducted a cross-sectional study of 1449 PD outpatients. The assessment comprised the Montgomery-Asberg Depression Rating Scale (MADRS) and the diagnostic criteria for dementia. PD severity and treatment complications were rated using Hoehn and Yahr staging and the Unified Parkinson's Disease Rating Scale (UPDRS) IV. The acknowledged level of care-dependency was documented. Care-dependency was present in 18.3% of all patients. A total of 13.9% had dementia, 18.8% had depression, and 14.3% had both. Regression analyses revealed increasing effects of age, PD duration, and PD severity on care-dependency in all three mental-disorder subgroups with the strongest effects in patients with depression only. Depressed patients with antidepressive treatment still had significantly higher PD severity, higher MADRS and UPDRS-IV scores but were not more likely to be care-dependent than non-depressed patients. Older age, longer duration and increased severity of PD contribute to care-dependency in patients with untreated depression. Treatment of depression is associated with lower rates of care-dependency.

Controlled and uncontrolled allergic asthma in routine respiratory specialist care - a clinical-epidemiological study in Germany.

BACKGROUND: Studies in the last decade showed high rates of poorly treated and poorly controlled asthma in the community. Extending these findings we describe the more recent situation in specialist respiratory care as the most frequent source of treatment provision using comprehensive clinical and patient assessments and exploring predictors for poor control. METHODS: This is a German cross-sectional, clinical epidemiological study in a nationally representative stratified treatment prevalence sample of N = 572 outpatients diagnosed with allergic asthma (AA; females 58.2%, aged 47.5 ± 16.3 (16-81 years). Treating physicians completed standardized clinical assessments (lung function, laboratory, clinical findings, severity, illness and treatment history, asthma control [GINA]), supplemented by patients' self-report measures (EQ5-D, AQLQ, ACT) and mental health module (CIDI-SF). RESULTS: A total of 65.4% of patients were rated (GINA) as controlled, 30.3% partially controlled, and 4.4% uncontrolled; the patient-rated ACT showed lower rates of control (19.9% controlled, 44.2% partial, 35.8% uncontrolled, kappa: 0.2). Consistent with findings of clinical measures, controlled asthma was highest among patients with pre-treatment stage I severity (83.6%) and decreased by pre-treatment severity (stage IV patients: 29.3%). Poorer control was associated with pre-treatment severity, nocturnal attacks, diminished adherence and comorbid anxiety/depression. Patients received complex multiple drug and non-drug interventions, largely consistent with guidelines. Degree of asthma control was associated with improved and even normalized quality of life findings. CONCLUSION: In this representative sample of longterm treated AA patients in specialist respiratory care we find better control rates and better adherence to guidelines as previous studies. Despite remarkable differences in clinician- vs patient-rated control ratings even the initially most severe stage IV patients (12.9% of patients) showed remarkable control rates and close to normal quality of life. Intensified treatment (e.g. omalizumab) was associated with improved control. Poorer control was associated with higher initial severity, diminished adherence, comorbid anxiety/depression and old age. LIMITATION: Findings apply to AA patients in respiratory specialist care sector which is likely to treat the more severely affected patients. Thus, findings cannot be generalized to the general population, other treatment settings or asthma types.

Aftereffects and sense of presence in virtual environments: formulation of a research and development agenda.

This report represents a committee summary of the current state of knowledge regarding aftereffects and sense of presence in virtual environments (VEs). The work presented in this article, and the proposed research agenda, are the result of a special session that was set up in the framework of the Seventh International Conference on Human Computer Interaction. Recommendations were made by the committee regarding research needs in aftereffects and sense of presence, and, where possible, priorities were suggested. The research needs were structured in terms of the short, medium, and long term and, if followed, should lead toward the effective use of VE technology. The 2 most critical research issues identified were (a) standardization and use of measurement approaches for aftereffects and (b) identification and prioritization of sensorimotor discordances that drive aftereffects. Identification of aftereffects countermeasures (i.e., techniques to assist users in readily transitioning between the real and virtual worlds), reduction of system response latencies, and improvements in tracking technology were also thought to be of critical importance.