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Objective To develop and validate a novel 14‐item self‐completed questionnaire (in English and German) enquiring about the presence of non‐motor symptoms (NMS) during the past month in patients with craniocervical dystonia in an international multicenter study. Methods The Dystonia Non‐Motor Symptoms Questionnaire (DNMSQuest) covers seven domains including sleep, autonomic symptoms, fatigue, emotional well‐being, stigma, activities of daily living, sensory symptoms. The feasibility and clinimetric attributes were analyzed. Results Data from 194 patients with CD (65.6% female, mean age 58.96 ± 12.17 years, duration of disease 11.95 ± 9.40 years) and 102 age‐ and sex‐matched healthy controls (66.7% female, mean age 55.67 ± 17.62 years) were collected from centres in Germany and the UK. The median total NMS score in CD patients was 5 (interquartile range 3–7), significantly higher than in healthy controls with 1 (interquartile range 0.75–2.25) (P

The SWAL-QOL questionnaire is a common tool for evaluating patients' dysphagia-specific quality of life. A validated German version is not available. This study aimed to establish a German version of the SWAL-QOL (G-SWAL-QOL) using a standardized translation procedure and to systematically evaluate its psychometric properties. The original SWAL-QOL was translated into German following international translation guidelines. A pilot study (45 subjects) confirmed comprehensibility of the G-SWAL-QOL. A consecutive series of 158 subjects (103 patients with dysphagia; 55 healthy controls) was then recruited to assess validity and reliability of the G-SWAL-QOL. Construct validity was analyzed through a correlation analysis with both (i) the Anderson Dysphagia Inventory (ADI-D) and (ii) the Short Form 36 (SF-36). Internal consistency and test-retest reliability were evaluated to determine reliability. All questions of the G-SWAL-QOL were comprehensible, except one which was subsequently revised. Construct validity of the G-SWAL-QOL was demonstrated by moderate to high correlations with the ADI-D (Spearman's rho 0.36 - 0.88). The G-SWAL-QOL was able to differentiate between patients with dysphagia and healthy controls (p 0.001) and was sensitive to disease severity measured by different food textures. Reliability of the G-SWAL-QOL was good to excellent for both internal consistency (Cronbach's α 0.7 for all domains, except eating desire [α = 0.69]) and test-retest reliability (Spearman's rho ≥ 0.68 for all domains; ICC 0.8 for all domains). The G-SWAL-QOL is a valid and reliable measuring tool for dysphagia-specific quality of life in German-speaking persons.

Background Apathy is a frequent symptom in Parkinson's disease (PD), substantially aggravating the course of PD. Regarding the accumulating evidence of the key role of apathy in PD, time-efficient assessments are useful for fostering progress in research and treatment. The Apathy Evaluation Scale (AES) is widely used for the assessment of apathy across different nosologies. Objective To facilitate the application of the AES in PD, we reduced the AES to two-thirds its length and validated this abbreviated version. Design Data sets of 339 PD patients of the DEMPARK/LANDSCAPE study without dementia and depression were randomly split into two samples. Data of sample 1 were used to develop a brief version of the AES (AES-12PD). A cross-validation was conducted in sample 2 and in a subsample of 42 PD patients with comorbid dementia and depressive symptomatology. Receiver operating characteristic analysis was applied to determine the optimal cutoff of the AES-12PD as an indicator of apathy. Results The AES-12PD featured high internal consistency that was better compared to the AES. The abbreviated scale was well differentiated from motor impairment and cognitive deficits. The AES-12PD cutoff of 27/28 was the optimal cutoff for apathy in PD patients without dementia and depression. The cutoff of 25/26 indicated apathy in PD patients with comorbid dementia and depression. Conclusion Results confirm a high internal consistency and good discriminant validity of the AES-12PD. The AES-12PD represents a reliable tool for the efficient assessment of apathy that can be applied in PD patients with and without dementia and depression.

Parkinson's disease (PD) frequently entails non-motor symptoms, worsening the course of the disease. Apathy is one of the core neuropsychiatric symptoms that has been investigated in recent years; research is however hampered by the limited availability of well-evaluated apathy scales for these patients. We evaluated the psychometric properties of the Apathy Evaluation Scale (AES) in a sample of PD patients. Psychometric properties, convergent and discriminant validity and sensitivity/specificity were evaluated in patients with (n = 582) or without dementia/depression (n = 339). Internal consistency was high in the entire sample as well as in patients without dementia/depression. Correlations were moderate for convergent validity (UPDRS I item 4: motivation). While apathy could be differentiated from cognitive decline, it was related to depression (Geriatric Depression Scale, GDS-15). The overall classification accuracy based on the UPDRS I item 4 was comparable for AES and GDS scores. The AES exhibits good psychometric properties in PD patients with and without dementia and/or depression. Commonly used screenings on the presence of apathy had low detection rates compared to the AES and reflected both apathetic and depressive symptoms. Psychometric evaluation of available instruments will support further research on the clinical relevance of apathy for disease progression and treatment approaches in PD patients.

Background The QUALIDEM is a dementia-specific Quality of life (Qol) instrument that is recommended for longitudinal studies and advanced stages of dementia. Our study aimed to develop a user guide for the German version of the QUALIDEM and to determine the item distribution, internal consistency and inter-rater reliability (IRR) of the German QUALIDEM. Methods A user guide was developed based on cognitive interviews with ten professional caregivers and a focus group with six professional caregivers. The item distribution, internal consistency and IRR were evaluated through a field test including n = 55 (mild to severe dementia) and n = 36 (very severe dementia) residents from nine nursing homes. Individuals with dementia were assessed four times by blinded proxy raters. Results A user guide with instructions for the application of the QUALIDEM and definitions and examples for each item was created. Based on the single-measure intra-class correlation coefficient (ICC for absolute agreement), we observed strong IRR for nearly all of the QUALIDEM subscales, with ICCs of at least 0.79. A lower ICC (ICC = 0.64) was only obtained for people with very severe dementia on the ‘negative affect’ subscale. Conclusions The IRR improved based on the application of the QUALIDEM user guide developed in this study. We demonstrated a sufficient IRR for all subscales of the German version of the QUALIDEM, with the exception of the ‘negative affect’ subscale in the subsample of people with very severe dementia. The item distribution and internal consistency results highlight the need to develop new informative items for some subscales. Electronic supplementary material The online version of this article (doi:10.1186/s12877-016-0296-0) contains supplementary material, which is available to authorized users.

Introduction: Harmonizing data across cohorts is important for validating findings or combining data in meta‐analyses. We replicate and validate a previous conversion of MoCA to MMSE in PD. Methods: We used five studies with 1,161 PD individuals and 2,091 observations measured with both the MoCA and MMSE. We compared a previously published conversion table using equipercentile equating with log‐linear smoothing to our internally derived scores. Results: Both conversions found good agreement within and across the studies when comparing true and converted MMSE (mean difference: 0.05; standard deviation: 1.84; median difference: 0; interquartile range: –1 to 1, using internal conversion). Conclusions: These results show that one can get a reliable and valid conversion between two commonly used measures of cognition in PD studies. These approaches need to be applied to other scales and domains to enable large‐scale collaborative analyses across multiple PD cohorts. © 2016 International Parkinson and Movement Disorder Society