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  • 1
    Online Resource
    Online Resource
    Perspectives of people living with Parkinson's disease on personalized prediction models
    Wiley ; 2022
    In:  Health Expectations Vol. 25, No. 4 ( 2022-08), p. 1580-1590
    Details
    In: Health Expectations, Wiley, Vol. 25, No. 4 ( 2022-08), p. 1580-1590
    Abstract: There is a great need for the development of personalized prediction models (PPMs) that can predict the rate of disease progression for persons with Parkinson's disease (PD), based on their individual characteristics. In this study, we aimed to clarify the perspective of persons diagnosed with PD on the value of such hypothetical PPMs. Methods We organized four focus group discussions, each including five persons with PD who were diagnosed within the last 5 years. The sessions focused on what they think of receiving a personalized prediction; what outcomes are important to them; if and how the possibility of influencing the prognosis would change the way they think of personalized predictions; how they deal with the uncertainty from a PPM; and what barriers and facilitators they expect for using a PPM. Results The wish of persons with PD for receiving personalized prognostic information was highly heterogenous, for various reasons. Most persons with PD would like to receive more personalized prognostic information, mainly to better prepare themselves and their loved ones for the future. The prediction provided should be as personalized as possible, and there should be adequate supervision and coaching by a professional when providing the information. They were particularly interested in receiving prognostic information when their interventions would be available that could subsequently influence the identified prognostic factor and thereby affect the disease course beneficially. Conclusion Most persons with PD in this study want more insight into their own future by means of prediction models, provided that this is explained and supervized properly by professionals. Patient or Public Contribution Two patient‐researchers were involved in the study design, conduct of the study, interpretation of the data and in preparation of the manuscript.
    Type of Medium: Online Resource
    ISSN: 1369-6513 , 1369-7625
    URL: Issue
    URL: Article
    DOI: 10.1111/hex.v25.4
    DOI: 10.1111/hex.13500
    Language: English
    Publisher: Wiley
    Publication Date: 2022
    detail.hit.zdb_id: 2006357-X
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  • 2
    Online Resource
    Online Resource
    Precompetitive Consensus Building to Facilitate the Use of Digital Health Technologies to Support Parkinson Disease Drug Development through Regulatory Science
    S. Karger AG ; 2020
    In:  Digital Biomarkers Vol. 4, No. Suppl. 1 ( 2020-11-26), p. 28-49
    Details
    In: Digital Biomarkers, S. Karger AG, Vol. 4, No. Suppl. 1 ( 2020-11-26), p. 28-49
    Abstract: Innovative tools are urgently needed to accelerate the evaluation and subsequent approval of novel treatments that may slow, halt, or reverse the relentless progression of Parkinson disease (PD). Therapies that intervene early in the disease continuum are a priority for the many candidates in the drug development pipeline. There is a paucity of sensitive and objective, yet clinically interpretable, measures that can capture meaningful aspects of the disease. This poses a major challenge for the development of new therapies and is compounded by the considerable heterogeneity in clinical manifestations across patients and the fluctuating nature of many signs and symptoms of PD. Digital health technologies (DHT), such as smartphone applications, wearable sensors, and digital diaries, have the potential to address many of these gaps by enabling the objective, remote, and frequent measurement of PD signs and symptoms in natural living environments. The current climate of the COVID-19 pandemic creates a heightened sense of urgency for effective implementation of such strategies. In order for these technologies to be adopted in drug development studies, a regulatory-aligned consensus on best practices in implementing appropriate technologies, including the collection, processing, and interpretation of digital sensor data, is required. A growing number of collaborative initiatives are being launched to identify effective ways to advance the use of DHT in PD clinical trials. The Critical Path for Parkinson’s Consortium of the Critical Path Institute is highlighted as a case example where stakeholders collectively engaged regulatory agencies on the effective use of DHT in PD clinical trials. Global regulatory agencies, including the US Food and Drug Administration and the European Medicines Agency, are encouraging the efficiencies of data-driven engagements through multistakeholder consortia. To this end, we review how the advancement of DHT can be most effectively achieved by aligning knowledge, expertise, and data sharing in ways that maximize efficiencies.
    Type of Medium: Online Resource
    ISSN: 2504-110X
    URL: Article
    DOI: 10.1159/000512500
    Language: English
    Publisher: S. Karger AG
    Publication Date: 2020
    detail.hit.zdb_id: 2906645-1
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  • 3
    Online Resource
    Online Resource
    Optimizing Treatment in Undertreated Late-Stage Parkinsonism: A Pragmatic Randomized Trial
    IOS Press ; 2020
    In:  Journal of Parkinson's Disease Vol. 10, No. 3 ( 2020-07-28), p. 1171-1184
    Details
    In: Journal of Parkinson's Disease, IOS Press, Vol. 10, No. 3 ( 2020-07-28), p. 1171-1184
    Type of Medium: Online Resource
    ISSN: 1877-7171 , 1877-718X
    URL: Article
    DOI: 10.3233/JPD-202033
    Language: Unknown
    Publisher: IOS Press
    Publication Date: 2020
    detail.hit.zdb_id: 2599550-9
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  • 4
    Online Resource
    Online Resource
    The association between patients' preferred treatment after the use of a patient decision aid and their choice of eventual treatment
    Wiley ; 2020
    In:  Health Expectations Vol. 23, No. 3 ( 2020-06), p. 651-658
    Details
    In: Health Expectations, Wiley, Vol. 23, No. 3 ( 2020-06), p. 651-658
    Abstract: To investigate the association between patients' preferred treatment and eventual treatment. Second, to compare patients with surgical treatment to watchful waiting in order to identify predictive factors for surgery. Methods A single‐centre retrospective study was performed between December 2015 and August 2018. Patients (≥18 years) who used a patient decision aid (PDA) for gallstones or inguinal hernia were included. After their first surgical consultation, patients received access to an online PDA. The patients' preferred treatment after the PDA was compared with their choice of eventual treatment. Multivariable regression analyses were performed for predictive factors for surgery. Results In total, 567 patients with gallstones and 585 patients with an inguinal hernia were included. Of the patients with gallstones, 121 (21%) preferred watchful waiting, 367 (65%) preferred surgery, and 79 (14%) were not sure. The patients' preferred treatment was performed in 85.9%. Frequent pain attacks (OR 2.1, 95% CI 1.1‐3.9, P  = .020) and preference for surgery (OR 4.4, 95% CI 1.9‐10.1, P  = .001) independently predicted surgery. Of the patients with an inguinal hernia, 77 (13.2%) preferred watchful waiting, 452 (78.8%) preferred surgery, and 56 (9.6%) were not sure. The patients' preferred treatment was performed in 86.0%. The preference for surgery (OR 5.2, 95% CI 2.5‐10.6, P   〈  .001) independently predicted surgery and worry about complications predicted avoidance of surgery (OR 0.5, 95% CI 0.2‐1.0, P  = .037). Conclusion This study, reflecting current clinical care, shows that patients' preferred treatment after using a PDA matches their eventual treatment choice in 86% of patients with gallstones or an inguinal hernia. In these patients, symptoms and patients' preference for surgery independently predicts eventual choice of surgery.
    Type of Medium: Online Resource
    ISSN: 1369-6513 , 1369-7625
    URL: Issue
    URL: Article
    DOI: 10.1111/hex.v23.3
    DOI: 10.1111/hex.13045
    Language: English
    Publisher: Wiley
    Publication Date: 2020
    detail.hit.zdb_id: 2006357-X
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  • 5
    Online Resource
    Online Resource
    Evaluation of a shared decision-making strategy with online decision aids in surgical and orthopaedic practice: study protocol for the E-valuAID, a multicentre study with a stepped-wedge design
    Springer Science and Business Media LLC ; 2021
    In:  BMC Medical Informatics and Decision Making Vol. 21, No. 1 ( 2021-12)
    Details
    In: BMC Medical Informatics and Decision Making, Springer Science and Business Media LLC, Vol. 21, No. 1 ( 2021-12)
    Abstract: Inguinal hernia repair, gallbladder removal, and knee- and hip replacements are the most commonly performed surgical procedures, but all are subject to practice variation and variable patient-reported outcomes. Shared decision-making (SDM) has the potential to reduce surgery rates and increase patient satisfaction. This study aims to evaluate the effectiveness of an SDM strategy with online decision aids for surgical and orthopaedic practice in terms of impact on surgery rates, patient-reported outcomes, and cost-effectiveness. Methods The E-valuAID-study is designed as a multicentre, non-randomized stepped-wedge study in patients with an inguinal hernia, gallstones, knee or hip osteoarthritis in six surgical and six orthopaedic departments. The primary outcome is the surgery rate before and after implementation of the SDM strategy. Secondary outcomes are patient-reported outcomes and cost-effectiveness. Patients in the usual care cluster prior to implementation of the SDM strategy will be treated in accordance with the best available clinical evidence, physician’s knowledge and preference and the patient’s preference. The intervention consists of the implementation of the SDM strategy and provision of disease-specific online decision aids. Decision aids will be provided to the patients before the consultation in which treatment decision is made. During this consultation, treatment preferences are discussed, and the final treatment decision is confirmed. Surgery rates will be extracted from hospital files. Secondary outcomes will be evaluated using questionnaires, at baseline, 3 and 6 months. Discussion The E-valuAID-study will examine the cost-effectiveness of an SDM strategy with online decision aids in patients with an inguinal hernia, gallstones, knee or hip osteoarthritis. This study will show whether decision aids reduce operation rates while improving patient-reported outcomes. We hypothesize that the SDM strategy will lead to lower surgery rates, better patient-reported outcomes, and be cost-effective. Trial registration : The Netherlands Trial Register, Trial NL8318, registered 22 January 2020. URL: https://www.trialregister.nl/trial/8318 .
    Type of Medium: Online Resource
    ISSN: 1472-6947
    URL: Article
    DOI: 10.1186/s12911-021-01467-0
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2021
    detail.hit.zdb_id: 2046490-3
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  • 6
    Online Resource
    Online Resource
    Multiple N-of-1 trials to investigate hypoxia therapy in Parkinson’s disease: study rationale and protocol
    Springer Science and Business Media LLC ; 2022
    In:  BMC Neurology Vol. 22, No. 1 ( 2022-12)
    Details
    In: BMC Neurology, Springer Science and Business Media LLC, Vol. 22, No. 1 ( 2022-12)
    Abstract: Parkinson’s disease (PD) is a neurodegenerative disease, for which no disease-modifying therapies exist. Preclinical and clinical evidence suggest that hypoxia-based therapy might have short- and long-term benefits in PD. We present the contours of the first study to assess the safety, feasibility and physiological and symptomatic impact of hypoxia-based therapy in individuals with PD. Methods/Design In 20 individuals with PD, we will investigate the safety, tolerability and short-term symptomatic efficacy of continuous and intermittent hypoxia using individual, double-blind, randomized placebo-controlled N-of-1 trials. This design allows for dose finding and for including more individualized outcomes, as each individual serves as its own control. A wide range of exploratory outcomes is deployed, including the Movement Disorders Society Unified Parkinson’s Disease Rating scale (MDS-UPDRS) part III, Timed Up & Go Test, Mini Balance Evaluation Systems (MiniBES) test and wrist accelerometry. Also, self-reported impression of overall symptoms, motor and non-motor symptoms and urge to take dopaminergic medication will be assessed on a 10-point Likert scale. As part of a hypothesis-generating part of the study, we also deploy several exploratory outcomes to probe possible underlying mechanisms of action, including cortisol, erythropoietin and platelet-derived growth factor β. Efficacy will be assessed primarily by a Bayesian analysis. Discussion This evaluation of hypoxia therapy could provide insight in novel pathways that may be pursued for PD treatment. This trial also serves as a proof of concept for deploying an N-of-1 design and for including individualized outcomes in PD research, as a basis for personalized treatment approaches. Trial registration ClinicalTrials.gov Identifier: NCT05214287 (registered January 28, 2022).
    Type of Medium: Online Resource
    ISSN: 1471-2377
    URL: Article
    DOI: 10.1186/s12883-022-02770-7
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2022
    detail.hit.zdb_id: 2041347-6
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  • 7
    Online Resource
    Online Resource
    Probabilistic Modelling of Gait for Robust Passive Monitoring in Daily Life
    Institute of Electrical and Electronics Engineers (IEEE) ; 2021
    In:  IEEE Journal of Biomedical and Health Informatics Vol. 25, No. 6 ( 2021-6), p. 2293-2304
    Details
    In: IEEE Journal of Biomedical and Health Informatics, Institute of Electrical and Electronics Engineers (IEEE), Vol. 25, No. 6 ( 2021-6), p. 2293-2304
    Type of Medium: Online Resource
    ISSN: 2168-2194 , 2168-2208
    URL: Article
    DOI: 10.1109/JBHI.2020.3037857
    Language: Unknown
    Publisher: Institute of Electrical and Electronics Engineers (IEEE)
    Publication Date: 2021
    detail.hit.zdb_id: 2687987-6
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  • 8
    Online Resource
    Online Resource
    Blue Light Therapy Glasses in Parkinson’s Disease: Patients’ Experience
    Hindawi Limited ; 2019
    In:  Parkinson's Disease Vol. 2019 ( 2019-06-18), p. 1-4
    Details
    In: Parkinson's Disease, Hindawi Limited, Vol. 2019 ( 2019-06-18), p. 1-4
    Abstract: Background . Blue light glasses have been introduced as a possible new treatment option to treat sleep disturbances in patients with Parkinson disease (PD). Assessing patient attitudes represents a key step in the road towards formal testing and introduction into clinical practice. Specifically, we aimed to assess how patients experience the use of blue light glasses, aiming to optimise compliance in upcoming clinical trials where these glasses will be tested for efficacy. Methods . We invited 58 PD patients who had used the blue light glasses for at least one week on a daily basis to complete an online survey about their experiences and self-reported impact. For this purpose, the System Usability Scale was used, supplemented with additional questions about (side)effects. A total of 31 patients (53%) replied. Results . 74% of respondents reported subjective improvements in night-time sleep, daytime sleepiness, depressive symptoms, motor functioning, or a combination thereof. The median score for the System Usability Scale (SUS; 0–100 range, higher scores indicating better performance) was 70.0. A total of 26 patients (84%) had an overall positive attitude towards the technique, with patients rating the glasses with an average score of 6.9 ± 2.0 (SD) out of 10. Except for one patient, all responders would like to continue using the glasses, mostly because they considered it a useful aid. Conclusion . Blue light therapy appears to have a positive effect on sleep, mood, and motor symptoms in PD. PD patients had an overall positive attitude towards blue light glasses as treatment for sleep disorders.
    Type of Medium: Online Resource
    ISSN: 2090-8083 , 2042-0080
    URL: Article
    DOI: 10.1155/2019/1906271
    Language: English
    Publisher: Hindawi Limited
    Publication Date: 2019
    detail.hit.zdb_id: 2573854-9
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  • 9
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    Online Resource
    Reply to: Hypoxia treatment of Parkinson’s disease may disrupt the circadian system
    Springer Science and Business Media LLC ; 2023
    In:  BMC Neurology Vol. 23, No. 1 ( 2023-06-19)
    Details
    In: BMC Neurology, Springer Science and Business Media LLC, Vol. 23, No. 1 ( 2023-06-19)
    Type of Medium: Online Resource
    ISSN: 1471-2377
    URL: Article
    DOI: 10.1186/s12883-023-03281-9
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2023
    detail.hit.zdb_id: 2041347-6
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  • 10
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    Online Resource
    Current Status and Future Prospects for Shared Decision Making before and after Total Knee Replacement Surgery—A Scoping Review
    MDPI AG ; 2021
    In:  International Journal of Environmental Research and Public Health Vol. 18, No. 2 ( 2021-01-14), p. 668-
    Details
    In: International Journal of Environmental Research and Public Health, MDPI AG, Vol. 18, No. 2 ( 2021-01-14), p. 668-
    Abstract: Background. To gain insight into the current state-of-the-art of shared decision making (SDM) during decisions related to pre and postoperative care process regarding primary total knee replacement (TKR). Methods. A scoping review was performed to synthesize existing scientific research regarding (1) decisional needs and preferences of patients preparing for, undergoing and recovering from TKR surgery, (2) the relation between TKR decision-support interventions and SDM elements (i.e., team talk, option talk, and decision talk), (3) the extent to which TKR decision-support interventions address patients’ decisional needs and preferences. Results. 2526 articles were identified, of which 17 articles met the inclusion criteria. Of the 17 articles, ten had a qualitative study design and seven had a quantitative study design. All included articles focused on the decision whether to undergo TKR surgery or not. Ten articles (all qualitative) examined patients’ decisional needs and preferences. From these, we identified four domains that affected the patients’ decision to undergo TKR: (1) personal factors, (2) external factors, (3) information sources and (4) preferences towards outcome prediction. Seven studies (5) randomized controlled trials and 2 cohort studies) used quantitative analyses to probe the effect of decision aids on SDM and/or clinical outcomes. In general, existing decision aids did not appear to be tailored to patient needs and preferences, nor were the principles of SDM well-articulated in the design of decision aids. Conclusions. SDM in TKR care is understudied; existing research appears to be narrow in scope with limited relevance to established SDM principles and the decisional needs of patients undertaking TKR surgery.
    Type of Medium: Online Resource
    ISSN: 1660-4601
    URL: Article
    DOI: 10.3390/ijerph18020668
    Language: English
    Publisher: MDPI AG
    Publication Date: 2021
    detail.hit.zdb_id: 2175195-X
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