Pediatric Series

The GMFCS Level V Child

When Independent Mobility Isn't Likely, Optimal Positioning Is Imperative

hand of a child

BABY AND FATHER’S HANDS: ISTOCKPHOTO.COM/MAGICAL_LIGHT

Much of the work of the seating and wheeled mobility professional focuses on independence: moving via a manual or power wheelchair.

But when independent mobility is not possible, what objectives should the seating and wheeled mobility team set for themselves and their client?

One example of that scenario is the child who has cerebral palsy and has been classified at GMFCS Level V.

Understanding GMFCS Scores

The Gross Motor Function Classification System (GMFCS) describes a child’s motor function while also indicating the level or complexity of mobility-related assistive technology a child would be expected to require, according to the Cerebral Palsy Alliance Research Foundation (cparf.org).

A GMFCS score (see sidebar) typically doesn’t change after age 5, so that score can be used to forecast future equipment needs.

The GMFCS scores motor function on a scale of 1 to 5, with higher scores indicating greater involvement.

Briefly, the different levels are as follows:

  • Level I: Walks without limitations.
  • Level II: Walks with limitations.
  • Level III: Walks using a hand-held mobility device. Uses wheeled mobility for longer distances, and may self-propel a manual wheelchair for shorter distances.
  • Level IV: Self-mobility with limitations; may use powered mobility.
  • Level V: Transported in a manual wheelchair. Limited in his/her ability to maintain head and trunk posture against gravity, and has limited control of leg and arm movements.

Given those typical abilities, what should the most important positioning considerations be for a child at Level V?

Weight Shifting & Pressure Relief

For example, do children at Level V need help with weight shifting and pressure relief?

Jed Malmberg is the Regional Category VP, Rehab Division, for Inspired by Drive.

“A dependent Level V child is typically unable to propel a manual wheelchair or operate a power chair due to physical strength limitations and sometimes cognitive impairment,” he said. “Often, they have poor trunk stability and poor head control. For these same reasons, being able to reposition themselves often becomes a concern. Anybody who is unable to pressure relieve effectively is at risk for pressure injury, especially in a seated posture for as many hours as they are likely to spend in a wheelchair daily.

“Contractures and range of motion are also of concern due to the lack of physical activity in their limbs.”

“Level V,” said Josh Tucker, National Sales Manager at Leggero, “means that their level of movement is extremely low — if any. Therefore, repositioning oneself is not possible. This could lead to skin breakdown (decubitus ulcers). The lack of muscle use leads to atrophy and in some cases, contractures. This is where tilt is beneficial. We can take pressure off of the ischials and redistribute. So yes, skin breakdown is a common concern. If the child is unable to communicate to you that they are not comfortable, it is up the caregiver to make sure they are being positioned properly and alleviating pressure.”

Functional Objectives

Even for a child who is unable to consistently and intentionally move, Tucker added that optimizing function must still be an important goal.

“Function is primary,” he said. “We want the child to be engaged, and life to be easy as possible for Mom/Dad/caregiver. Having a properly functioning chair and seating can have an effect on a number of activities and recreation for the child and family, making it easier for a care worker to feed a youngster, to improve the child’s field of vision, and to increase comfort.”

Proper positioning, Malmberg noted, impacts more than just skin and soft tissue health.

“The goal is always to allow or accommodate for a functional position,” he said. “You focus on core/trunk stability first, and then try to achieve a level visual plane and as upright positioning as possible to allow them to interact with their environment. Communication, eye contact, respiratory function, digestion — all are achieved better in an upright position.”

“I firmly believe sitting and positioning are key,” Tucker said. “Their ability to maintain anti-gravity head and trunk postures and arm/leg control is extremely limited. Having appropriate positioning and seating can have a positive impact on the pulmonary function of children with cerebral palsy, with implications for capacity for speech and overall lung health.”

Tucker also wants to optimize opportunities for the child to interact with his or her environment.

“We want the child to feel engaged,” he said, “so maintaining eye contact is always important. At Level V, sensory disorders, cognition, communication are all affected. Upright seat positioning or forward inclined, anterior pelvic positioning shifts the center of gravity forward. That will decrease posterior pelvic rotation for a more upright and stable sitting posture. Meanwhile, a posterior or reclined position may reduce pressure on the ischials, and reduce activity of hyperactive muscles. There have been a few studies that show a straddled or saddle-seat posture (with hips abducted and externally rotated) may improve postural control.”

And there can be other benefits as well.

“When children are level with their peers,” Tucker noted, “social, emotional and psychological development is enhanced.”

The Importance of Positioning Options

As with any wheelchair user, however, optimal positioning must include the opportunity to change position frequently.

Asked about the importance of building in tilt and recline for the Level V child, Malmberg said, “In my opinion and experience, they are essential. When trying to justify these two options, I would always point out that even in our vehicles, office chairs, and chairs at home, we all have these features because our body take a wooden dining room chair and keep it in their family room to relax and be comfortable in. We can’t expect kids to do the same thing for hours a day in a standard non-accommodating wheelchair and not experience physical issues and discomfort.”

“Tilt is a must-have due to pressure redistribution,” Tucker said. “Tilting shifts body weight to relieve pressure from certain areas of the body, which is important for users who spend all day in their wheelchairs. It also helps improve circulation. With tilt we can also enhance visual orientation, speech and alertness.

“Reclining has some of the same benefits of tilt. We do need to keep an eye out for shearing in recline mode. When the chair is reclined, gravity comes into effect and causes the body to slide downward. Tilt-in-space adjustments can position the child for their physical health benefits, and also impact numerous daily activities. Capacity for use of communication devices can be improved, and feeding capabilities can be improved as well.”

Other Considerations to Include

When working with a child with complex needs, Tucker noted the importance of system growth: “Growability is something we need to pay attention to as the child is still in a developmental state. We also need to know if the child is fed by mouth or feeding tube; if so, does the chair they are in support that?”

To encourage being active in the community, the family must also believe the seating and mobility systems are travel friendly. “Transportation is always important with parents,” Tucker said. “How easy does the chair collapse or fold down? How much does it weigh — does Mom need a ramp, or are they picking the chair up for trips? How are Mom and Dad transporting the child, because transportation tie downs may be needed? Will they be using a tray? Where does the communication device mount?”

First and foremost, though, is ensuring that the child is optimally positioned.

“You will often see custom molding, aggressive specialized backrests, headrests, cushions in these scenarios,” Malmberg said. “You have to position and support first. Growability and transportability all become secondary needs. Obviously, they are needed, but support, posture, and positioning are primary.

“Adaptive seating is also associated with decreased risk of spinal deformity,” Tucker said. “In some cases, these devices promote the correction of scoliosis in children with cerebral palsy.”

This article originally appeared in the January 2019 issue of Mobility Management.

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