Open-source data management system for Parkinson’s disease follow-up

Folador, João Paulo; Vieira, Marcus Fraga; Pereira, Adriano Alves; Andrade, Adriano O.

doi:10.7717/peerj-cs.396

Cited by 4 publications

(2 citation statements)

References 34 publications

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“…These modules are completely independent from other modules of the system, allowing future advances, such as the inclusion of modules for the generation of reports ( e.g. , for the presentation of the frequency of motor fluctuations, tremor and bradykinesia) and connection with other data management systems for people with PD ( Folador et al, 2021b ).…”

Section: Discussionmentioning

confidence: 99%

“…It is precisely in order to fill this gap that this study presents the design and implementation of a serious game, so-called RehaBEElitation . The game was designed considering a long experience of our research group in the evaluation of motor signs of PD ( de Oliveira Andrade et al, 2020 ; de Oliveira et al, 2021 ; Escudeiro et al, 2021 ; Folador et al, 2021b ; Folador et al, 2021a ; Luiz et al, 2021 ; Machado et al, 2016 ; Peres et al, 2021 ; Rabelo et al, 2017 ).…”

Section: Introductionmentioning

confidence: 99%

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RehaBEElitation: the architecture and organization of a serious game to evaluate motor signs in Parkinson’s disease

Mendes

Sá

Marques

et al. 2023

PeerJ Computer Science

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Background The use of serious games (SG) has received increasing attention in health care, and can be applied for both rehabilitation and evaluation of motor signs of several diseases, such as Parkinson’s disease (PD). However, the use of these instruments in clinical practice is poorly observed, since there is a scarcity of games that, during their development process, simultaneously address issues of usability and architectural design, contributing to the non-satisfaction of the actual needs of professionals and patients. Thus, this study aimed to present the architecture and usability evaluation at the design stage of a serious game, so-called RehaBEElitation, and assess the accessibility of the game. Methods The game was created by a multidisciplinary team with experience in game development and PD, taking into consideration design guidelines for the development of SG. The user must control the movements of a bee in a 3D environment. The game tasks were designed to mimic the following movements found in the gold-standard method tool—Movement Disorder Society-Unified Parkinson’s Disease Rating Scale (MDS-UPDRS)—for the assessment of individuals with PD: hand opening and closing, hand extension and flexion, hand adduction and abduction, finger tapping, and forearm supination and pronation. The user interacts with the game using a wearable interface device that embeds inertial and tactile sensors. The architecture of RehaBEElitation was detailed using the business process model (BPM) notation and the usability of the architecture was evaluated using the Nielsen-Shneiderman heuristics. Game accessibility was evaluated by comparing the overall scores of each phase between 15 healthy participants and 15 PD patients. The PD group interacted with the game in both the ON and OFF states. Results The system was modularized in order to implement parallel, simultaneous and independent programming at different levels, requiring less computational effort and enabling fluidity between the game and the control of the interface elements in real time. The developed architecture allows the inclusion of new elements for patient status monitoring, extending the functionality of the tool without changing its fundamental characteristics. The heuristic evaluation contemplated all the 14 heuristics proposed by Shneiderman, which enabled the implementation of improvements in the game. The evaluation of accessibility revealed no statistically significant differences (p < 0.05) between groups, except for the healthy group and the PD group in the OFF state of medication during Phase 3 of the game. Conclusions The proposed architecture was presented in order to facilitate the reproduction of the system and extend its application to other scenarios. In the same way, the heuristic evaluation performed can serve as a contribution to the advancement of the SG design for PD. The accessibility evaluation revealed that the game is accessible to individuals with PD.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

RehaBEElitation: the architecture and organization of a serious game to evaluate motor signs in Parkinson’s disease

Mendes

Sá

Marques

et al. 2023

PeerJ Computer Science

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A Data-Driven Methodology and Workflow Process Leveraging Research Electronic Data Capture (REDCap) to Coordinate and Accelerate the Implementation of Personalized Microbiome-Based Nutrition Approaches in Clinical Research

Tourab,

Ellacuría,

Sanz

et al. 2024

Lecture Notes of the Institute for Computer Sciences, Social Informatics and Telecommunications Engineering

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Evaluation of the Parkinson’s Remote Interactive Monitoring System in a Clinical Setting: Usability Study

Bridges,

Taylor,

Weber

2024

JMIR Hum Factors

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Background The fastest-growing neurological disorder is Parkinson disease (PD), a progressive neurodegenerative disease that affects 10 million people worldwide. PD is typically treated with levodopa, an oral pill taken to increase dopamine levels, and other dopaminergic agonists. As the disease advances, the efficacy of the drug diminishes, necessitating adjustments in treatment dosage according to the patient’s symptoms and disease progression. Therefore, remote monitoring systems that can provide more detailed and accurate information on a patient’s condition regularly are a valuable tool for clinicians and patients to manage their medication. The Parkinson’s Remote Interactive Monitoring System (PRIMS), developed by PragmaClin Research Inc, was designed on the premise that it will be an easy-to-use digital system that can accurately capture motor and nonmotor symptoms of PD remotely. Objective We performed a usability evaluation in a simulated clinical environment to assess the ease of use of the PRIMS and determine whether the product offers suitable functionality for users in a clinical setting. Methods Participants were recruited from a user sign-up web-based database owned by PragmaClin Research Inc. A total of 11 participants were included in the study based on the following criteria: (1) being diagnosed with PD and (2) not being diagnosed with dementia or any other comorbidities that would make it difficult to complete the PRIMS assessment safely and independently. Patient users completed a questionnaire that is based on the Movement Disorder Society–sponsored revision of the Unified Parkinson’s Disease Rating Scale. Interviews and field notes were analyzed for underlying themes and topics. Results In total, 11 people with PD participated in the study (female individuals: n=5, 45%; male individuals: n=6, 55%; age: mean 66.7, SD 7.77 years). Thematic analysis of the observer’s notes revealed 6 central usability issues associated with the PRIMS. These were the following: (1) the automated voice prompts are confusing, (2) the small camera is problematic, (3) the motor test exhibits excessive sensitivity to the participant’s orientation and position in relation to the cameras, (4) the system poses mobility challenges, (5) navigating the system is difficult, and (6) the motor test exhibits inconsistencies and technical issues. Thematic analysis of qualitative interview responses revealed four central themes associated with participants’ perspectives and opinions on the PRIMS, which were (1) admiration of purpose, (2) excessive system sensitivity, (3) video instructions preferred, and (4) written instructions disliked. The average system usability score was calculated to be 69.2 (SD 4.92), which failed to meet the acceptable system usability score of 70. Conclusions Although multiple areas of improvement were identified, most of the participants showed an affinity for the overarching objective of the PRIMS. This feedback is being used to upgrade the current PRIMS so that it aligns more with patients’ needs.

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Open-source data management system for Parkinson’s disease follow-up

Cited by 4 publications

References 34 publications

RehaBEElitation: the architecture and organization of a serious game to evaluate motor signs in Parkinson’s disease

RehaBEElitation: the architecture and organization of a serious game to evaluate motor signs in Parkinson’s disease

A Data-Driven Methodology and Workflow Process Leveraging Research Electronic Data Capture (REDCap) to Coordinate and Accelerate the Implementation of Personalized Microbiome-Based Nutrition Approaches in Clinical Research

Evaluation of the Parkinson’s Remote Interactive Monitoring System in a Clinical Setting: Usability Study

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