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Stories: Finding the perfect fit

Massive limb use study aims to help therapists track which prostheses work best for children at different stages

Today’s artificial arms are powered by advanced microprocessor-driven myoelectric technology that allows users to do a vast range of two-handed tasks.

But prostheses for children are a little trickier. For one thing, an eight-year-old girl who lives on a farm will use her artificial limb to do different activities than a 12-year-old boy who lives in the city, so the same prosthesis may not be the best option for one of them.

Prosthetic rehabilitation therapists and researchers at Bloorview Kids Rehab were among the first to discover that not all children with upper-body prostheses used their limbs in the same way, which may have limited their effectiveness.

The problem was they didn’t have the data to prescribe the best product. And when powered artificial arms can cost tens of thousands of dollars, parents and funding agencies want to get it right the first time.

So the modest Bloorview pilot study that began seven years ago to collect data to identify trends among 40 children has morphed into the Prosthetic Upper Extremity Functional Index (PUFI), a monumental research effort to spot artificial-limb usage patterns among over 1,000 children around the world.

PUFI is essentially a multiple choice, computer-based questionnaire asking how children aged two to 18 fare performing a lengthy list of two-handed tasks like holding a hockey stick or tying their shoelaces.

The results - housed in a database - will provide a complete comparative portrait of “how children use their devices to perform these tasks, as well as which prostheses work better for different age groups in different rehabilitation and everyday situations,” says Virginia Wright, the clinical researcher co-ordinating the project.

“The PUFI software program - which is filled out by parents and children - is time-efficient,” Virginia says. “Scoring the questionnaire only takes a few seconds, so clinicians can be more directed in what they’re doing and problem-solve as to what tasks might be more of an issue. Right now we use a lot of paper measures. They’re very cumbersome because there’s no easy way to compile them to compare children’s experiences.”

In 2002, the PUFI project was embraced by the famed Shriners Hospital for Children, a network of 22 facilities throughout North America that specializes in orthopedic care. Shriners is currently using the PUFI criteria to measure prosthetic usage trends among more than 300 children, giving the index the statistical weight to be considered an accurate portrait.

Bloorview recently secured the commitment of 12 other facilities to participate in building PUFI into the first database of its kind: five in Canada, three in Britain and one each in Australia, Holland, Sweden and Slovenia.

Word of the project spread positively through rehabilitation circles after Sheila Hubbard, manager of Bloorview’s amputee team, presented pilot study results to international conferences for prosthetists and orthotists. In April, the project was endorsed in the international Archives of Physical Medicine and Rehabilitation, which concluded that the PUFI “showed promise in identifying prosthetic skill and use in children of different ages and abilities.”

“We want to get an idea of how usage patterns change over time, such as what eight-year-olds use [prostheses] for compared to 13-year-olds,” Virginia says. This information will be invaluable to manufacturers when modifying their products. “Governments and foundations who pay for prosthetics and research want extensive data measuring their effectiveness,” Virginia says.

The project started out with $30,000 from Bloorview Kids Rehab and the Ontario Rehabilitation Technology Consortium for development of the software needed to process the data. Members of this team were Rose Nishiyama, Ka Lun Tam and Susan Cohen.

More recent funding of over $20,000 from the ORTC and $66,000 from Bloorview Children’s Hospital Foundation was essential in enabling the PUFI sample to go international, so it is large and diverse enough to make the index a standard scientific measurement.

“It also allows us to do a collaborative analysis with the different centres,” Virginia says. “Each centre will also get a report on the overall trends from the data collected at their centre.”

Researchers want to add 100 children to the database each year - between three and 10 kids per facility - as well as re-evaluate the patterns from the children who are already participating. The ultimate goal is to put the PUFI database on the web, so therapists can instantly add to and access the latest data.

To be connected with expert sources, contact:

Louise Kinross, Manager, Communications
Tel: 416-424-3866
Pager: 416-589-8826
E-mail: media at bloorview dot ca

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