The Whole Child

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December 2002

By C.A. Wolski

Yoshio Setoguchi, MD, medical director, assists a patient with her prosthetic.

The Child Amputee Prosthetics Project (CAPP) at Shriners Hospitals, Los Angeles, does more than provide artificial limbs to its pediatric patients. It strives to make their bodies, spirits, and families whole again as well.

According to Yoshio Setoguchi, MD, CAPP’s medical director, this all-encompassing approach is only natural. “If we’re going to habilitate, we need to not only look at the child’s physical needs and total medical care, but also at psychologically how they’re adapting to their limb deficiency,” he says. “A true rehabilitation program means the total patient is rehabilitated, not just the physical part.”

Founded in 1954 at the University of California-Los Angeles (UCLA), CAPP was an offshoot of military medicine and the advances made in the wake of the Korean conflict. Regional, federally funded CAPP centers were started in Los Angeles, New York, and Chicago to fit young children with prosthetics. In California, upper extremity cases were handled by UCLA in Southern California, and children with missing lower limbs were seen at University of California-Berkeley in Northern California. However, the Berkeley program never really got off the ground, according to Setoguchi, and its program was eventually absorbed by UCLA.

Shriners Hospitals became involved with CAPP in the late 1980s, when it entered a partnership with UCLA to run the program. This arrangement continued until 1992, when Shriners took over the program from the university.

GETTING WITH THE PROGRAM

CAPP and Shriners orthotics programs currently have an active caseload of about 500 children who range in age between newborn and 18 years old. The ratio between upper and lower extremity cases is evenly split, as is the ratio between those with congenital and acquired missing limbs. However, the yearly number of orthotic fittings far surpasses prosthetic fittings. According to Jeff Honma, CPO, director of CAPP/Prosthetics and Orthotics at Shriners, last year there were approximately 2,100 new orthotic devices delivered, and approximately 300 new prosthetic fittings, not including the number of repairs or adjustments made.

These new cases are recruited from children regionally, nationally, and internationally. The Los Angeles CAPP program has seen patients from as far away as Russia and the Middle East. Most, however, are referred directly to Setoguchi and CAPP and the orthotics staff of four prosthetists, three orthotists, and three occupational therapists through a series of regional clinics and the hospital.

“A family may call Dr Setoguchi directly or a child may be referred from one of the hospital’s clinics,” says Joanna Patton, OTR/L, a staff occupational therapist with CAPP. “All families must submit an application to the hospital and be approved by the medical director.”

A referral does not mean that the child will be fitted with a prosthetic. Prospective patients and their families must fill out an application indicating that they are under 18, have a missing limb, and will benefit from a total team treatment approach. If the child is accepted, then the patient goes through a team evaluation involving physicians, prosthetists, OTs or PTs, and a Shriners social worker.

“The OT evaluates the growth and development of the baby who has a limb deficiency. The expectation is that development will be within normal limits as long as there are no central nervous system problems and the limb loss is not severe,” says Patton. “The therapist evaluates the older child’s ability to perform daily living tasks such as bathing, dressing, eating, and school skills. Not every child is a candidate for a prosthesis.” If the child is determined to be a good candidate, and the family wants to fit their child with a prosthesis, the CAPP team will provide the family with all of the options available to them. After the visit, the staff has a team meeting to determine the course of treatment. Ability to pay is not a factor in providing service, as Shriners services are offered to patients free of charge.

Team visits reflect the family-oriented approach to care that has been a primary facet of the program since its days at UCLA. “At Shriners Hospital, the CAPP program has a multidisciplinary team, which works together every day to provide care for children with limb deficiencies or amputations,” Patton says.

GROWING INTO IT

CAPP’s young patients must be able to sit independently before being fitted with a prosthetic, usually one with a passive hand. When a child is old enough to have the terminal device activated, cognitive as well as physical issues have to be considered.

“Prosthetic training for a 2-year-old is not the same as training an adult,” says Patton. “In order to have some success, the child should be able to understand a two-step direction, sit still for 10 minutes, and allow the therapist to show them how to operate the prosthesis. Little ones have very limited attention spans.”

Every prosthesis is custom made on-site and follows a standardized process. “Typically, for any prosthesis, we take a plaster cast of the limb, then we fill the cast to get a positive mold, which we modify and adjust. Then, depending on if it’s an upper or lower limb, we’ll get the corresponding components,” says Honma. “We put the prosthesis together, align it, and have the child utilize it. Then we fine-tune the alignment so that it functions properly.”

Though this process is similar to the one practiced with adults, the differentiating factor is that because children are still growing, a new limb will have to be fabricated about once a year to account for continued physical development.

Patton says that after the child receives a first prosthesis, he is seen frequently by the therapist for training at Shriners’ facilities, which include a laboratory, fitting room, and gym, replete with parallel bars and a therapy area. On clinic days, Patton says, “our clinic is very crowded, and sometimes it’s difficult to find a private place to work.”

After the initial fitting and training, the children come back as outpatients to Shriners at least every 3 months for a fit and function test, and for team evaluations every 6 to 8 months. The fit and function test may take several weeks to complete. To make the process less burdensome on the family, who may have had to travel several hundred miles, Shriners allows the child to be admitted to the hospital or stay in a guest room until the evaluation, which may include the fitting of a new prosthesis, is completed.

During these follow-up evaluations, Patton hopes to see a limb that is well worn. “We see some prostheses that are as new and clean as the day they were issued. It’s obvious that the child is not wearing it,” she says. “We would rather see a worn-out prosthesis that shows a lot of use.”

As the children get older, follow-ups become more routine, focused on making sure the equipment is working correctly and the child is using it.

Occasionally, older children will decide that they no longer want to wear their prosthetic. “The child may wear and benefit from the prosthesis during a specific developmental time period and that is still a positive outcome,” says Patton. “An older child may choose not to wear the prosthesis, and I don’t have a problem with that decision.”

a family project

Though the CAPP staff is very important in fitting and training the young patients, the key component to successfully incorporating a prosthetic into a child’s life is family involvement. All treatment decisions ultimately must reflect the desires of the family. “We try to tailor the treatment program to what the parents and family can handle,” says Setoguchi.

Parents are always a part of the process, usually observing the OT during treatment. “Therapists generally work with the child once a week or once a month, so the parents have to learn how to help their child at home. They are the crucial part of this process, because the parents need to encourage the child to wear and use the prosthesis every day,” says Joanne Shida, OTR/L, a CAPP OT. “It is not natural for the child to use the prosthesis. It is more natural for the child to use their arm the way it is. When the prosthesis is on, parents must remind the child to use it and put objects into the terminal device. With time and practice, the child learns to use the prosthesis in a spontaneous manner.”

As crucial as family involvement is, it can also be one of the biggest hurdles the CAPP staff has to overcome. This is because there are psychological issues that must be dealt with that may impede fitting and training with a prosthetic. If the family or child is having psychological issues that need resolving, they will be referred to counseling, which can occur separate from or concurrent with the child’s treatment.

Shida says that she and the CAPP staff try to help parents cope with their children’s condition. “We try to help parents realize that they are not responsible for having a child with a limb deficiency,” she says. “They are, however, responsible for coping with the situation. If families seem to be having a difficult time in dealing with the situation, then we refer them to a trained specialist—a social worker or psychologist.”

WORTHWHILE PURSUIT

While undoubtedly helping its young patients, CAPP has benefits for the staff as well. “We do bond with the families, because we see these children all the time. That’s one of the neat parts of the program,” says Patton. “Some of the children I worked with at UCLA, I know personally as friends.”

Like Patton, Shida’s 13 years with CAPP have brought her a wealth of memorable experiences and encounters. “The story that touches me the most was when we provided a prosthesis to a girl who lost her arm from a sarcoma,” she says. “It was very touching for us because after the girl passed away, her aunt brought her prosthesis to us and really thanked us for helping her and doing a good job with her.”

For Shida, working with the kids is the “best.”

“The kids are really great,” she says. “You really want to help the child develop a positive sense of self, help them become more independent, and encourage them to do anything they want to do.”

Fundamentally, though, it is the impact that Shida can make on a child that makes it all worthwhile for her. “The children learn how to use the prosthesis quickly and are proud of themselves,” she says. “We see families on a regular basis and see children become very independent. It is very rewarding.”

C.A. Wolski is associate editor of Rehab Management.

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