Wearable device may aid Batten disease children with vision loss: Study
Young patients often need caregiver help to use OrCam MyEye 2 correctly
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The OrCam MyEye 2, a wearable device designed to help people with visual impairment navigate the world, may be a useful aid for children with juvenile Batten disease, though these patients often need help from their caregivers to use the device correctly, according to a small feasibility study.
“The results from this pilot study suggest the OrCam MyEye 2 as a potential additional safe augmentative communication device option for children with [juvenile Batten] disease,” researchers wrote. “From our experience during the study and based on parental feedback, use of the device by children with CLN3 disease requires assistance and reminders from caregiver.”
The study, “Prospective pilot safety, feasibility study of an optic-to-audio device for children with CLN3 disease,” was published in the Orphanet Journal of Rare Diseases.
Speaker tells wearer what camera is capturing
Juvenile Batten disease, also called CLN3 disease, is a genetic disorder that causes progressive damage to the brain. Vision problems are usually among the first symptoms of juvenile Batten, as children often start having eye issues around ages 4 to 7 years, with vision rapidly deteriorating to the point of legal blindness within a few years.
The OrCam MyEye 2 is a commercially available optic-to-audio assistive device marketed for people who have difficulty seeing. The device, which is designed to be mounted on eyeglasses, contains a forward-facing camera and a speaker at the back. Essentially, the camera sees what’s in front of the person, and the speaker provides a description.
A team of scientists at the National Institutes of Health conducted a pilot trial (NCT04974307) to test whether this assistive device could be a useful aid for kids with juvenile Batten and those without Batten who have low vision.
The researchers noted that the device is “advertised to have text read to the users, and to help users identify faces, objects, and colors through audio output by pointing and aiming the camera at the intended target.” They added that these features could, in theory, help some kids with juvenile Batten who are losing their sight.
The study enrolled 10 participants — nine with juvenile Batten and one with low vision due to other causes. The researchers originally intended to enroll more participants, but the study was terminated early due to slow recruitment.
Overall, more intensive evaluation of the device and how training can be used to generalize [the device’s] use both in and out of the home is warranted to assess its full applicability for children with CLN3 disease, and for children with other multiple disability condition.
In the study, the children were equipped with the OrCam MyEye 2 for one week, with assessments on days one and five. The main goal of this study was to assess the device’s feasibility — in other words, to test whether children could reliably use it.
Results were generally positive. Almost all children successfully completed the feasibility tests — which included the ability to recognize text, color, and faces — and both parents and children rated the device as easy to use. The researchers noted, however, that parents often reported needing to help their kids use the device at home, with most saying it wasn’t very useful when they weren’t at home.
The researchers noted that, while there was a lot of variability, children with juvenile Batten tended to do better with the device during assessments at day five than at day one, suggesting that kids can become more comfortable with it over time. The researchers called for further studies to build on these results and explore how devices like this may help children with juvenile Batten.
“Overall, more intensive evaluation of the device and how training can be used to generalize [the device’s] use both in and out of the home is warranted to assess its full applicability for children with CLN3 disease, and for children with other multiple disability conditions,” the scientists concluded.
