Dataset Information

Towards seeing the visual impairments in Parkinson's disease: protocol for a multicentre observational, cross-sectional study.

ABSTRACT:

Background

Visual disorders are common in Parkinson's disease (PD) but their exact frequency and severity are unknown. Good visual functioning is crucial for patients with PD, because of their need to compensate for loss of automated motor control and their postural instability, forcing patients to guide their movements visually. Here, we describe the study design of a cross-sectional, multi-centre study aiming to: (1) validate the Visual Impairment screening questionnaire (VIPD-Q, which aims to identify PD patients who should be referred to an ophthalmologist for further assessment); (2) study the prevalence of visual disorders in PD; (3) study the severity and clinical impact of different types of visual disorders in PD; and (4) explore treatment options for ophthalmologic disorders in PD, as a basis for future guideline development.

Methods

This study consists of two phases. In phase one, 750 PD patients and 250 healthy controls will be recruited to complete the VIPD-Q. In phase two, a subgroup of responders (n = 100) (with the highest and lowest scores on the VIPD-Q) will be invited for an extensive neurological and ophthalmological assessment. The in-depth ophthalmologic examination will serve as the "gold standard" for validating the VIPD-Q. Moreover, these assessments will be used to study associations between visual disorders and clinical presentation, in order to gain more insight in their clinical impact.

Discussion

Our study will heighten the awareness of visual problems in PD and offers a robust starting point to systematically approach this subject. In current daily practice, the association between visual problems and PD is far from obvious to both patients and clinicians. Consequently, patients may not adequately report visual problems themselves, while clinicians miss potentially treatable visual disorders. Routinely asking patients to complete a simple screening questionnaire could be an easy solution leading to timely identification of visual problems, tailored treatment, restored mobility, greater independence and improved quality of life.

Trial registration

Dutch Trial Registration, NL7421 , Registered on 4 December 2018 - Retrospectively registered.

SUBMITTER: Borm CDJM

PROVIDER: S-EPMC6591947 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundInflammations play crucial role in the pathogenesis of Parkinson's disease (PD), however, their possible value in the diagnosis or tracking of the progress of PD is still limited, because of discordant results in the literature and a lack of information regarding its reproducibility. Thus, overall longitudinal and cross-sectional studies are needed. This multicentre study was designed to investigate the association between multiple peripheral immune biomarkers and the development and progression of PD.MethodsThis was a longitudinal and multicentre study. First, we measured the levels of five typical cytokines and five focused chemokines in 76 PD patients and 76 healthy controls (HCs) in a discovery cohort. Then, a validation cohort of 80 PD and 80 HC participants was recruited from four multicentre locations. In addition, a prospective follow-up of early-stage PD patients was performed with significant biomarkers. Finally, we performed further verification in an exploratory set of patients with idiopathic REM sleep behaviour disorder (iRBD).ResultsIn the discovery set, CXCL12, CX3CL1 and IL-8 levels were significantly higher in PD patients than in HCs (p < 0.05). The receiver-operating characteristic (ROC) curve for a combination of these three biomarkers produced a high area under the curve (AUC) of 0.89 (p < 0.001). Moreover, four biomarkers (the previous three and CCL15) were significantly associated with PD in the discovery and validation cohorts. Furthermore, in the prospective follow-up cohort, CX3CL1 levels were associated with motor progression after a mean interval of 43 months. In addition, CX3CL1 and IL-8 levels were higher in iRBD patients than in HCs.ConclusionWe showed a correlation between a profile of four peripheral immune biomarkers and PD development and progression. Our findings may provide a basis whereby PD patients with abnormal inflammatory profiles can be identified and receive timely therapeutic interventions.

Project description:Simulations of visual impairment are used to educate and inform the public. However, evidence regarding their accuracy remains lacking. Here we evaluated the effectiveness of modern digital technologies to simulate the everyday difficulties caused by glaucoma. 23 normally sighted adults performed two everyday tasks that glaucoma patients often report difficulties with: a visual search task in which participants attempted to locate a mobile phone in virtual domestic environments (virtual reality (VR)), and a visual mobility task in which participants navigated a physical, room-scale environment, while impairments were overlaid using augmented reality (AR). On some trials, a gaze-contingent simulated scotoma-generated using perimetric data from a real patient with advanced glaucoma-was presented in either the superior or inferior hemifield. The main outcome measure was task completion time. Eye and head movements were also tracked and used to assess individual differences in looking behaviors. The results showed that the simulated impairments substantially impaired performance in both the VR (visual search) and AR (visual mobility) tasks (both P < 0.001). Furthermore, and in line with previous patient data: impairments were greatest when the simulated Visual Field Loss (VFL) was inferior versus superior (P < 0.001), participants made more eye and head movements in the inferior VFL condition (P < 0.001), and participants rated the inferior VFL condition as more difficult (P < 0.001). Notably, the difference in performance between the inferior and superior conditions was almost as great as the difference between a superior VFL and no impairment at all (VR: 71%; AR: 70%). We conclude that modern digital simulators are able to replicate and objectively quantify some of the key everyday difficulties associated with visual impairments. Advantages, limitations, and possible applications of current technologies are discussed. Instructions are also given for how to freely obtain the software described (OpenVisSim).

Project description:BackgroundMultidisciplinary teams (MDT) formulate expert informed treatment recommendations for people with cancer. We set out to examine how the factors proposed by the functional perspective of group decision making (DM), that is, interaction process, internal factors (factors emanating from within the group such as group size), external circumstances (factors coming from the outside of the team), and case-complexity affect the quality of MDT decision making.MethodsThis was a cross-sectional observational study. Three cancer MDTs were recruited with 44 members overall and 30 of their weekly meetings filmed. Validated observational instruments were used to measure quality of DM, interactions, and complexity of 822 case discussions.ResultsThe full regression model with the variables proposed by the functional perspective was significant, R2 = 0.52, F(20, 801) = 43.47, P < .001, adjusted R2 = 0.51. Positive predictors of DM quality were asking questions (P = .001), providing answers (P = .001), team size (P = .007), gender balance (P = .003), and clinical complexity (P = .001), while negative socioemotional reactions (P = .007), gender imbalance (P = .003), logistical issues (P = .001), time-workload pressures (P = .002), and time spent in the meeting (P = .001) were negative predictors. Second half of the meetings also saw significant decrease in the DM quality (P = .001), interactions (P = .001), group size (P = .003), and clinical complexity (P = .001), and an increase in negative socioemotional reactions (P = .001) and time-workload pressures (P = .001).DiscussionTo the best of our knowledge, this is the first study to attempt to assess the factors proposed by the functional perspective in cancer MDTs. One novel finding is the effect of sociocognitive factors on team DM quality, while another is the cognitive-catch 22 effect: while the case discussions are significantly simpler in the second half of the meeting, there is significantly less time left to discuss the remaining cases, further adding to the cognitive taxation in teams who are now rapidly attempting to close their time-workload gap. Implications are discussed in relation to quality and safety.

Project description:IntroductionStatus epilepticus (SE) is a common life-threatening neurological emergency that can cause long-term impairments. Overall outcomes remain poor. Major efforts are required to clarify the epidemiology of SE and the determinants of outcomes, thereby identifying targets for improved management.Methods and analysisICTAL Registry is a multicentre open cohort of critically ill patients with convulsive, non-convulsive or psychogenic non-epileptic SE. Observational methods are applied to collect uniform data. The goal of the ICTAL Registry is to collect high-quality information on a large number of patients, thereby allowing elucidation of the pathophysiological mechanisms involved in mortality and morbidity. The registry structure is modular, with a large core data set and the opportunity for research teams to create satellite data sets for observational or interventional studies (eg, cohort multiple randomised controlled trials, cross-sectional studies and short-term and long-term longitudinal outcome studies). The availability of core data will hasten patient recruitment to studies, while also decreasing costs. Importantly, the vast amount of data from a large number of patients will allow valid subgroup analyses, which are expected to identify patient populations requiring specific treatment strategies. The results of the studies will have a broad spectrum of application, particularly given the multidisciplinary approach used by the IctalGroup research network.Ethics and disseminationThe ICTAL Registry protocol was approved by the ethics committee of the French Intensive Care Society (#CE_SRLF 19-68 and 19-68a). Patients or their relatives/proxies received written information to the use of the retrospectively collected and pseudonymised data, in compliance with French law. Prospectively included patients receive written consent form as soon as they recover decision-making competency; if they refuse consent, they are excluded from the registry. Data from the registry will be disseminated via conference presentations and peer-reviewed publications.Trial registration numberNCT03457831.