Children with below-elbow deficiencies do not need prostheses for everyday activities

Prosthesis use was not associated with improved function or quality of life.

Issue: February 2006

Most children with unilateral congenital below elbow deficiency continue to use prostheses. But the devices may not be necessary for everyday activities, according to a survey of children who discontinued prosthesis use. This was part of a large study of quality of life and function in children with unilateral congenital below elbow deficiency.

The literature reports a high rate of prosthesis abandonment for children with upper expremity absences, with rates ranging from 10% to 45%. Researchers often attribute prosthesis rejection to the child not receiving their first device at the appropriate age, not receiving enough training or that the child received the wrong type or style of prosthesis. However, other factors are also involved, according to researchers with the Shriners Hospitals for Children (SHC).

“As clinicians and practioners, we often say that it is the lack of feeling and sensation that they have, or the lack of independent movement of their fingers. However, the children often just stated that it was overall function and comfort that were their major concerns,” said Lisa V. Wagner, OTR/L, a registered occupational therapist at SHC in Greenville, N.C.

Wagner and colleagues at several Shriners Hospitals in the U.S. surveyed 489 children with unilateral congenital below-elbow deficiency (UCBED) on various issues related to prosthesis use. The study population included both prosthesis wearers and nonwearers.

Wagner presented some of the results at the Joint American Society for Surgery of the Hand/American Society for Hand Therapists Annual Meeting in San Antonio.

Reasons for prosthesis nonuse

The Shriners Hospitals system at present cares for more than 2000 children with UCBED. Ten hospitals participated in the five-year multicenter outcome study, funded by the Shriners Hospital Clinical Outcomes Study Advisory Board, according to Wagner.

Both children and their parents underwent an extensive evaluation protocol involving seven computerized questionnaires and functional analysis tests. The specific analysis carried out by Wagner and other occupational therapists under the direction of co-authors Michelle James, MD, and Anita Bagley, PhD, both at the Northern California SHC, looked at the demographic questionnaire addressed to nonwearers. In this questionnaire, question #34 specifically asked children their reasons for not wearing a prosthesis and offered the following answers:

Prosthesis did not help function.
Prosthesis was uncomfortable.
Parent or child did not like appearance.
Child was teased.
Maintenance, fitting or clinic appointments were too burdensome.
Prosthesis had a poor fit.
Children could specify “other” reasons.

Of the 489 children enrolled, 66% used a prosthesis and 34% did not.

Among those who continued to use a prosthesis, a subgroup of children interviewed separately from their parents reported several reasons for their continued use. “Most [children] felt the prosthesis was useful for specific high-level activities such as sports, and that the prosthesis improved their appearance by giving them a more balanced look,” James told Orthopedics Today.

Based on the study results, specially designed prostheses should be recommended for specific high-level activities, such as sports or musical instruments, James said. However, most children with UCBED do not find a prosthesis helpful for everyday activities, she noted.

No need for a prosthesis

From the group of nonwearers, 134 children/parents responded to question #34. These patients ranged in age from 2 to 19 years; 28 children had never worn a prosthesis.

Children were most likely to abandon prosthesis use between eight and 13 years of age. Additionally, younger children were more likely to wear a prosthesis than older children, James noted.

Because respondents could list as many reasons as they wanted, question #34 generated a total of 220 responses. Reasons cited for not wearing a prosthesis include the following:

34% cited function;
30% cited comfort;
8% cited the child’s appearance;
6% cited poor fit;
5% cited maintenance;
5% cited teasing;
2% cited the parents’ appearance; and
38% cited “other” reasons.

“When we looked more closely at our ‘other’ population, again, 36 [responses] were for function and 21 responses were for comfort,” Wagner said.

“In their own words, our children said they had no need for a prosthesis. They found out they could do more without it.”

Other reasons included, “It got in my way; it was too hot; too heavy; too sweaty; uncomfortable in every way; and they wanted the arm to look more life-like,” Wagner said.

“They wanted to go to school and just be a normal kid. They could not feel with it; the prosthesis drew attention; ... their parents were too lazy; there was poor training; or they had no opportunity because the prosthesis was not recommended,” she continued.

“This leads us to the question, ‘Should all children with an upper limb deficiency have the opportunity to try a prosthesis? And if so, why?’”

“There is evidence from this study that shows that prosthesis wear was not associated with improved function and quality of life,” she said. “We give parents and kids one more thing to argue with in regards to wearing, and are we sending these kids a detrimental message to their self esteem - that you are not a whole person or that you need this hand in order to fit in with the rest of us.”

“[Perhaps] we can learn a lot from [one] 17-year-old patient who simply stated that the prosthesis was not a part of her, ‘and I'd like to figure it out on my own just how I want to be.’”

For more information:
Wagner LV, James M, Bagley A. Reasons for prosthesis rejection by children with unilateral congenital below elbow deficiency (UCBED). Paper Joint 2. Presented at the Joint Annual ASSH/ASHT Meeting. Sept. 22-24, 2005. San Antonio, Texas.