165 research outputs found

    Management of social isolation and loneliness in Parkinson’s disease: Design principles

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    Persons with Parkinson’s disease (PwPs) may have difficulty participating in social activities due to motor and non-motor symptoms that may lead to social isolation and loneliness. This paper addresses how to manage social isolation and loneliness among PwPs using digital solutions. Information and Communication Technologies (ICT) have the potential to address social isolation and loneliness, but there are no current solutions that specifically target these issues among PwPs. In this paper, we present an ongoing project based on design science research (DSR) combined with a user-centered approach to identify challenges, requirements, and design objectives. The empirical work includes data from interviews and focus groups with PwPs and healthcare professionals. Based on the empirical material, we formulated design principles on identified challenges and requirements, which were instantiated into a high-fidelity prototype. This initial cycle serves as a foundation for ongoing improvements and evaluations in a continuous DSR process

    The Incidence of Trilateral Retinoblastoma : A Systematic Review and Meta-Analysis

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    PURPOSE: To estimate the incidence of trilateral retinoblastoma in patients with retinoblastoma. " DESIGN: Systematic review and meta-analysis. METHODS: We searched Medline and Embase for scientific literature published between January 1966 and July 2015 that assessed trilateral retinoblastoma incidence. We used a random-effects model for the statistical analyses. " RESULTS: We included 23 retinoblastoma cohorts from 26 studies. For patients with bilateral retinoblastoma the unadjusted chance of developing trilateral retinoblastoma across all cohorts was 5.3% (95% confidence interval [CI]: 3.3%-7.7%); the chance of pineal trilateral retinoblastoma was 4.2% (95% CI: 2.6%-6.2%) and the chance of nonpineal trilateral retinoblastoma was 0.8% (95% CI: 0.4%-1.3%). In patients with hereditary retinoblastoma (all bilateral cases, and the unilateral cases with a family history or germline RB1 mutation) we found a trilateral retinoblastoma incidence of 4.1% (95% CI: 1.9%-7.1%) and a pineal trilateral retinoblastoma incidence of 3.7% (95% CI: 1.8%-6.2%). To reduce the risk of overestimation bias we restricted analysis to retinoblastoma cohorts with a minimum size of 100 patients, resulting in adjusted incidences of 3.8% (95% CI: 2.4%-5.4%), 2.9% (95% CI: 1.9%-4.2%), and 0.7% (95% CI: 0.3%-1.2%) for any, pineal, and nonpineal trilateral retinoblastoma, respectively, among patients with bilateral retinoblastoma. Among hereditary retinoblastoma we found an adjusted trilateral retinoblastoma incidence of 3.5% (95% CI: 1.2%-6.7%) and a pineal trilateral retinoblastoma incidence of 3.2% (95% CI: 1.4%-5.6%). CONCLUSION: The estimated incidence of trilateral retinoblastoma is lower than what is reported in previous literature, especially after exclusion of small cohorts that were subject to overestimation bias in this context. (C) 2015 by Elsevier Inc. All rights reserved.)Peer reviewe

    Impact of device programming on the success of the first anti-tachycardia pacing therapy:An anonymized large-scale study

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    BackgroundAntitachycardia pacing (ATP) is an effective treatment for ventricular tachycardia (VT). We evaluated the efficacy of different ATP programs based on a large remote monitoring data set from patients with implantable cardioverter-defibrillators (ICDs).MethodsA dataset from 18,679 ICD patients was used to evaluate the first delivered ATP treatment. We considered all device programs that were used for at least 50 patients, leaving us with 7 different programs and a total of 32,045 episodes. We used the two-proportions z-test (α = 0.01) to compare the probability of success and the probability for acceleration in each group with the corresponding values of the default setting.ResultsOverall, the first ATP treatment terminated in 78.4%-97.5% of episodes with slow VT and 81.5%-91.1% of episodes with fast VT. The default setting of the ATP programs with the number of sequences S = 3 was applied to treat 30.1% of the slow and 36.6% of the fast episodes. Reducing the maximum number of sequences to S = 2 decreased the success rate for slow VT (P ConclusionWhile the default programs performed well, we found that increasing the number of sequences from 3 to 4 was a promising option to improve the overall ATP performance

    Aligning Concerns in Telecare:Three Concepts to Guide the Design of Patient-Centred E-Health

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    The design of patient-centred e-health services embodies an inherent tension between the concerns of clinicians and those of patients. Clinicians’ concerns are related to professional issues to do with diagnosing and curing disease in accordance with accepted medical standards. In contrast, patients’ concerns typically relate to personal experience and quality of life issues. It is about their identity, their hopes, their fears and their need to maintain a meaningful life. This divergence of concerns presents a fundamental challenge for designers of patient-centred e-health services. We explore this challenge in the context of chronic illness and telecare. Based on insights from medical phenomenology as well as our own experience with designing an e-health service for patients with chronic heart disease, we emphasise the importance – and difficulty – of aligning the concerns of patients and clinicians. To deal with this, we propose a set of concepts for analysing concerns related to the design of e-health services: A concern is (1) meaningful if it is relevant and makes sense to both patients and clinicians, (2) actionable if clinicians or patients – at least in principle – are able to take appropriate action to deal with it, and (3) feasible if it is easy and convenient to do so within the organisational and social context. We conclude with a call for a more participatory and iterative approach to the design of patient-centred e-health services

    Screening for pineal trilateral retinoblastoma revisited: a meta-analysis

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    Topic To determine until what age children are at risk for pineal trilateral retinoblastoma (TRb), whether its onset is linked to the age at which intraocular retinoblastomas develop, and the lead time from a detectable pineal TRb to symptoms. Clinical relevance About 45% of patients with retinoblastoma – those with a germline RB1 pathogenic variant – are at risk for pineal TRb. Early detection and treatment is essential for survival. Current evidence is unclear on the usefulness of screening for pineal TRb and, if useful, until what age screening should be continued. Methods We conducted a study according to the MOOSE guideline for reporting meta-analyses of observational studies. We searched PubMed and Embase between January 1, 1966, and February 27, 2019, for published literature. We considered articles reporting patients with TRb with survival and follow-up data. Inclusion of articles was performed separately and independently by two authors, and two authors also independently extracted the relevant data. They resolved discrepancies by consensus. Results One hundred thirty-eight patients with pineal TRb were included. Of 22 asymptomatic patients, 21 (95%) were diagnosed before the age of 40 months (median 16, interquartile range 9–29). Age at diagnosis of pineal TRb in patients diagnosed with retinoblastoma at ≤6 months versus >6 months of age were comparable (P=0.44), suggesting independency between the ages at diagnosis of intraocular retinoblastoma and pineal TRb. The laterality of intraocular retinoblastoma and its treatment were unassociated with the age when the pineal TRb was diagnosed. The lead time from an asymptomatic to a symptomatic pineal TRb was approximately 1 year. By performing a screening magnetic resonance imaging scan every 6 months after the diagnosis of heritable retinoblastoma (median age 6 months) until the age of 36 months, at least 311 and 776 scans would be required to detect one asymptomatic pineal TRb and to save one life, respectively. Conclusion Patients with retinoblastoma are at risk for pineal trilateral retinoblastoma for a shorter period than previously assumed and the age at diagnosis of pineal trilateral retinoblastoma is independent of the age at diagnosis of retinoblastoma. The GRADE level of evidence for these conclusions remains low.Peer reviewe

    Update on DLR's OSIRIS program and first results of OSIRISv1 on Flying Laptop

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    Optical satellite links have gained increasing attention throughout the last years. Especially for the application of optical satellite downlinks. Within the OSIRIS program, DLR's Institute of Communications and Navigation develops optical terminals and systems which are optimized for small satellites. After the successful qualification and launch of two precursor terminals, DLR currently develops OSIRISv3, a 3rd generation OSIRIS terminal with up to 10 Gbps downlink rate, and OSIRIS4Cubesat, a miniaturized version optimized for Cubesat Applications. The University of Stuttgart's Institute of Space Systems develops small satellites, which are used to demonstrate novel technologies in the Space domain. Together, DLR and University of Stuttgart integrated the first OSIRIS generation onboard the Flying Laptop satellite, which was launched in July 2017 and has been successfully operated since. This paper will give an overview about DLR's OSIRIS program. Furthermore, it will show first results of OSIRISv1 on Flying Laptop. Therefore, the Flying Laptop satellite and OSIRISv1 will be explained. Preliminary results from the validation campaign, where optical downlinks have been demonstrated, will be given. © 2019 SPIE. Downloading of the abstract is permitted for personal use only
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