Boy With SMA Type 2 Able to Walk, Play Wearing Exoskeleton at Home
Robotic device well-tolerated by nonambulatory 6-year-old across two months
For a boy with spinal muscular atrophy (SMA) type 2, wearing a robotic gait-training device at home led to mobility gains and enabled him to participate in new activities like games and sports, a case study has found.
According to a nursing assessment, the training was well-tolerated, with only one instance over two months where the 6-year-old needed to sit down from tiredness.
“Exoskeleton technology could be considered a new caring resource that allows children with SMA Type II to walk, helps improve associated self-care problems, such as impaired mobility, and increases their self-care agency,” the researchers wrote.
The report, “Using a robotic exoskeleton at home: An activity tolerance case study of a child with spinal muscular atrophy,” was published in the Journal of Pediatric Nursing.
In children with SMA type 2, muscle weakness and wasting begin to emerge before they are 18 months old, and patients never gain the ability to stand up independently.
Exoskeletons to offset with lower limb weakness likely to become part of care
Wearable robotic suits, or exoskeletons, are an emerging technology that offer support to people with lower limb weakness, helping them to stand or walk when they previously wouldn’t have been able to. The ATLAS 2025 — consisting of robotic legs, a trunk and eight motors (four in each leg) — is one such device designed specifically for children with neurological diseases.
A recent study found that use of Marsi Bionics’ ATLAS 2030 — a version of the suit approved in the European Union for children with SMA — led to improvements in joint strength and mobility for three boys with SMA type 2 .
But the effects of wearing the device in an at-home environment to perform self-care and daily activities hasn’t been evaluated in SMA patients. In other words, it isn’t clear how well the device will be tolerated when going about everyday life.
“Understanding how the exoskeleton technology use affects patient care is crucial for nurses because it is likely that these technologies will be incorporated into the treatment and caring of patients all around the world in the future,” the researchers wrote.
The Spanish research team carried out a case study of an SMA type 2 patient participating in another trial (NCT05416034) evaluating the effects of ATLAS 2025, worn at the home, on quality of life in three children.
This 6-year-old boy had the highest degree of muscle weakness and the greatest functional limitations of the three children in that study. He also had chronic respiratory failure, requiring mechanical ventilation during sleep, as well as a breathing and feeding tube.
His treatments included the approved SMA therapy Spinraza (nusinersen), oral salbutamol to treat breathing problems, and physiotherapy every day. Daily care was provided by a caregiver at an adapted-motor handicapped school and by his parents.
The boy wore the ATLAS 2025 device when at home for two months, where he was monitored by a physical therapist. From Monday to Friday, he wore the device while walking for about an hour, in addition to performing other daily activities. Overall, the training consisted of 38 sessions, and the exoskeleton was worn for 30 of them.
A nursing assessment was performed at the study’s beginning and end to assess the child’s self-care status and tolerance for the device. Field notes were also collected during 20 of the training sessions.
In the initial assessment, the parents were identified as unable to fully compensate for the boy’s inability to walk. After the two months of training, this deficit was found to be resolved, driven by changes in the child’s activity levels and the addition of the new care resource.
Boy catches balls while walking using device
When wearing the exoskeleton in automatic mode, meaning it provided full walking assistance, the boy showed improvements in terms of walking time and number of steps taken. His average number of steps increased from 273.5 in the first 10 sessions to 364.6 in the final 10.
“As sessions progressed, the patient was more capable of overcoming his own previous milestones,” the researchers wrote.
In another mode, the robotic skeleton only kicks in support if the child exerts sufficient, intentional force. Effects here were more limited, likely due to the large amount of effort that intentional walking requires, the team added.
Notably, the boy was also able to participate in games and activities he hadn’t previously been able to, from darts to basketball, with the length of these activities improving over time.
“In the first three sessions, the child only performed the activity of walking with the exoskeleton using the automatic mode,” the researchers wrote. “However, in the final days, he was able to play sports while walking and play difficult games, such as catching small balls while walking. He also started to perform more interactive games.”
Levels of fatigue generally decreased over time, and the boy eventually reported feeling no fatigue after the training sessions.
Overall, the nursing assessments did not find signs of activity intolerance, and the boy was only once asked to sit down due to tiredness. Psychological factors likely played a role in this tolerance, the assessments noted.
Some functional improvements were also observed after training across a range of tests.
“Exoskeleton technology could be considered a new resource for the professional care of children with neuromuscular diseases that cannot walk,” the researchers wrote. “More research from nursing and caring sciences perspective should be conducted to provide more evidence with a larger sample of participants to support or refute the results obtained in this study.”
Four of this study’s 10 authors are employees of Marsi Bionics, the developer of the ATLAS 2025.
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