Caregiver education in Parkinson’s disease: formative evaluation of a standardized program in seven European countries

The formative evaluation of a standardized psychosocial education program for patients with Parkinson's disease (PD) and their caregivers. The results of the participation of the caregivers are presented next to the data of the patients. Caregivers (n = 137) and patients with PD (n = 151) participated in the 8-week program in separate groups. Measurements were performed on psychosocial problems (BELA-P/A-k), health state (EQ-5D VAS), quality of life (PDQ-39) and depression (SDS) 1 week before and 1 week after the program. Participants rated their mood on a visual analogue scale before and after each session, and they filled in an evaluation questionnaire after the last session. Scores on the BELA-P/A-k improved significantly on the 'bothered by scale' as well as the 'need for help scale'. No improvements were found on EQ-5D VAS, PDQ-39 and SDS. Mood ratings improved significantly after each session. Most participants evaluated the program as positive. Feedback led to improvements in the program, which are incorporated in a final manual. The program was feasible to run in the different countries. This exploratory study led to improvements in the program and recommendations for further research. A study on the effectiveness of the program is the next step.Pathophysiology of paroxysmal and chronic degenerative progressive disorder of the central and periferal nervous syste

Identification of Novel α-Synuclein Isoforms in Human Brain Tissue by using an Online NanoLC-ESI-FTICR-MS Method

Parkinson’s disease (PD) and Dementia with Lewy bodies (DLB) are neurodegenerative diseases that are characterized by intra-neuronal inclusions of Lewy bodies in distinct brain regions. These inclusions consist mainly of aggregated α-synuclein (α-syn) protein. The present study used immunoprecipitation combined with nanoflow liquid chromatography (LC) coupled to high resolution electrospray ionization Fourier transform ion cyclotron resonance tandem mass spectrometry (ESI-FTICR-MS/MS) to determine known and novel isoforms of α-syn in brain tissue homogenates. N-terminally acetylated full-length α-syn (Ac-α-syn1–140) and two N-terminally acetylated C-terminally truncated forms of α-syn (Ac-α-syn1–139 and Ac-α-syn1–103) were found. The different forms of α-syn were further studied by Western blotting in brain tissue homogenates from the temporal cortex Brodmann area 36 (BA36) and the dorsolateral prefrontal cortex BA9 derived from controls, patients with DLB and PD with dementia (PDD). Quantification of α-syn in each brain tissue fraction was performed using a novel enzyme-linked immunosorbent assay (ELISA)

Translating Dysphagia Evidence into Practice While Avoiding Pitfalls: Assessing Bias Risk in Tracheostomy Literature.

Critically ill patients who require a tracheostomy often have dysphagia. Widespread practice guidelines have yet to be developed regarding the acute assessment and management of dysphagia in patients with tracheostomy. In order for clinicians to base their practice on the best available evidence, they must first assess the applicable literature and determine its quality. To inform guideline development, our objective was to assess literature quality concerning swallowing following tracheostomy in acute stages of critical illness in adults. Our systematic literature search (published previously) included eight databases, nine gray literature repositories and citation chasing. Using inclusion criteria determined a priori, two reviewers, blinded to each other, conducted an eligibility review of identified citations. Patients with chronic tracheostomy and etiologies including head and/or neck cancer diagnoses were excluded. Four teams of two reviewers each, blinded to each other, assessed quality of included studies using a modified Cochrane Risk of Bias tool (RoB). Disagreements were resolved by consensus. Data were summarized descriptively according to study design and RoB domain. Of 6,396 identified citations, 74 studies met our inclusion criteria. Of those, 71 were observational and three were randomized controlled trials. Across all studies, the majority (> 75%) had low bias risk with: participant blinding, outcome reporting, and operationally defined outcomes. Areas requiring improvement included assessor and study personnel blinding. Prior to translating the literature into practice guidelines, we recommend attention to study quality limitations and its potential impact on study outcomes. For future work, we suggest an iterative approach to knowledge translation