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1.
BMC Med Inform Decis Mak ; 24(1): 233, 2024 Aug 23.
Article in English | MEDLINE | ID: mdl-39180041

ABSTRACT

BACKGROUND: The increasing demand for remote medical care, driven by digital healthcare advancements and the COVID-19 pandemic, necessitates effective solutions tailored to patients and healthcare practitioners. Co-design, involving collaboration between software developers, patients, and healthcare practitioners, prioritizes end-user needs. Research indicates that integrating patient perspectives enhances user experience and usability. However, its application in healthcare has been limited to small projects. This work focuses on co-designing a technological solution to enhance the monitoring and visual rehabilitation of individuals with Age-Related Macular Degeneration (AMD), a condition that significantly impacts the quality of life in people over 60. Current vision rehabilitation systems lack personalization, motivation, and effective progress monitoring. Involving patients and healthcare practitioners in the design process aims to ensure the final product meets their needs. METHODS: The project employs iterative and collaborative principles, involving a vision rehabilitation expert and two AMD patients as active users in the application's development and validation. The process begins by establishing requirements for user accounts and rehabilitation exercises. It continues with an initial approach extended through user validation. Co-design is facilitated by specific workshops marking each project iteration, totaling four workshops, along with continuous communication sessions between experts and developers to validate design decisions. Initial requirements gathering and constant feedback from end-users, the visual rehabilitator, and patients are crucial for refining the product effectively. RESULTS: The workshops produced a prototype featuring a test to monitor changes and progression and 15 visual rehabilitation exercises. Numerous patient and vision rehabilitation-driven software modifications led to a final design that is responsive and adaptive to end-user needs. CONCLUSIONS: The Rehab-AMD pilot project aims to develop a collaborative and adaptive software solution for AMD rehabilitation by actively involving stakeholders and applying iterative design principles. Co-design in the Rehab-AMD solution proves to be a methodology that identifies usability issues and needs from the initial design stages. This approach ensures that software developers create a final product that is genuinely useful and manageable for people with AMD and the targeted vision rehabilitators.


Subject(s)
Macular Degeneration , Humans , Macular Degeneration/rehabilitation , Software Design , Telerehabilitation , COVID-19
2.
Vision (Basel) ; 7(3)2023 Sep 10.
Article in English | MEDLINE | ID: mdl-37756134

ABSTRACT

People with Down syndrome have more visual problems than the general population. They experience premature ageing, and they are expected to also have an acceleration in worsening visual function. A prospective observational study which includes visual acuity, refractive error, accommodation, binocular and colour vision was performed on young adults with (n = 69) and without (n = 65) Down syndrome and on a senior group (n = 55) without Down syndrome. Results showed significant differences in visual acuity between groups (p < 0.001), and it can be improved with a new prescription in 40% of the participants with Down syndrome. Regarding the accommodative state, no significant differences were found between groups of young people. Concerning binocular vision, 64.7% of strabismus was observed in the group with Down syndrome (p < 0.001). Visual abnormalities are significant in young adults with Down syndrome and are different from those of older people without Down syndrome, some of which can be improved by providing the optimal prescription as well as regular eye examinations.

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