Infant Prosthetic Fitting
Milo B. Brooks, M.D. Julie Shaperman, O.T.R.
Reprinted from the American Journal of Occupational Therapy. Vol. XIX, No. 6, November-December, 1965.
The concept of successful fitting of unilateral below-elbow amputees before the age of 5 has now become well accepted. This is in contrast to ideas prevalent ten years ago when the Child Amputee Prosthetics Project at the University of California at Los Angeles was initiated. At that time ideas of fitting very young children were being introduced by the Area Amputee Project of the Michigan Crippled Children's Commission.
Since then interest has become focused on the more severely involved multiple amputee and phocomelia patients. However, the more standard amputee types, and particularly the unilateral below elbow, continue to represent the major part of the upper extremity child amputee caseload in the United States. Continued scrutiny and evaluation of our methods with these children are needed if we are to improve and streamline methods of treatment for them.
Since 1955, the Child Amputee Prosthetics Project at the University of California, Los Angeles, has provided care for limb-deficient children, and a majority of the Project's caseload has been unilateral below-elbow amputee patients. During the last ten years the Project's professional staff has gained certain impressions regarding the effectiveness of early prosthetic fitting for this group. These are that infant fitting results in: (1) full-time wearing of the prosthesis, (2) skillful operation of the prosthesis, (3) natural and spontaneous patterns of using the prosthesis and including it in activities, (4) good habits of prosthesis maintenance, and (5) good acceptance of the prosthesis by the child, family, and community.
The first purpose of this study was to attempt an objective evaluation of these impressions in order to refine and improve current methods and to maintain and strengthen those practices most influential in successful case management.
Establishing objective and valid criteria for evaluating patient performance in these broad areas is difficult. Abilities of. infants and young children are constantly changing as they grow, and individual variation is great. The second purpose of this study was to develop a simple rating scale and test whether it could, when applied to Individuals in a homogeneous group, distinguish differences in patient performance sufficiently to evaluate our treatment of these patients.
The Child Amputee Prosthetics Project maintains detailed records on each patient, including data on: (1) prosthesis fitting, (2) training received, (3) prosthesis maintenance and replacement, (4) wearing patterns established, (5) operating skills, (6) pattern of using prosthesis, and (7) attitudes of the parents and child toward the prosthesis.
A data card summarizing the above information was prepared for each child in this study, using clinic notes, referral material, prescriptions, photographs, appointment records, reports of the therapists, the physician, the social worker, and correspondence from the school or other sources. Also included were results of psychological testing and psychiatric reports as available.
In order to compile this data in a manner that would allow description and evaluation, a Prosthesis Adjustment
Scale was developed (Table 1 ), which made it possible to give each child a numerical rating in the areas under study. Each child was rated 0, 1, or 2 in each of the five categories listed in Table 1 . Ratings were assigned from the information on the data card and by the therapist working with the child. However, in the acceptance category, the child being rated did not always meet all of the qualifications for any one of the three described scores; in such cases, the rating which best described the child's total acceptance pattern was assigned. As a further check on the acceptance rating, the scores given by the child's social worker and therapist were compared. There was 82% agreement between the two raters.
(It is suggested that prior to subsequent use of the scale, rater scores be compared to insure that the definitions of each item are clearly understood. )
Patient Group Under Study
Sixty-eight patients were included in this study. All were patients at the Child Amputee Prosthetics Project and were congenital, unilateral below-elbow amputees fitted with prosthesis before the age of 5. This group represents the Project's total patient population of this age and amputee type.
Forty-four of these children were fitted before the age of 2 and were of the amputee types shown in Table 2 .
At the completion of this study, the average length of time of prosthesis fitting of children in this first group was 4 1/2 years. The longest period an individual had been fitted was nine years and the shortest was six months. The mean age at the time of the ratings was 6.2 years, and the range was from 3 years 1 month to 11 years 3 months.
The second group of 24 children was fitted between ages 2 and 5, primarily because they were not referred to the Project for care until that time. This group was made up of the amputee types shown in Table 3 .
The average length of time of prosthesis fitting among this second group was six years. The longest period an individual had been fitted was 13 years and the shortest was 15 months. The mean age at the time the ratings were made was 10.6 years, and the range was from 6 years 8 months to 17 years. Some patients fitted more than nine years ago, before the Child Amputee Prosthetics Project was initiated, would probably be handled differently if fitted today. Whether this might have eliminated some failures can only be speculated.
Included in the total group under study are 13 children who have become inactive in the program because of the family's departure from the area or rejection of prosthesis. In seven cases, the family moved out of the Southern California area. Sufficient current data were available on those recently inactivated; the others were sent a detailed questionnaire requesting information on the interim period.
Six of the 13 rejected prosthesis and are no longer active in the Project's prosthetics program. A study of these failures was one of the purposes of this study, for it was considered that much could be learned from an analysis of these cases.
All children in this study were scheduled to participate in the therapy program offered by the Project. This was given on an outpatient basis with consistent and regular sessions once a month to three times a week or daily, as indicated. These usually continued over a period of years and stressed parent and sibling participation. Therapy was carried out not only at the Project but, a major part of the time, at treatment units near the patient's home.
Typically a child received therapy once monthly before a cable for terminal device operation was introduced and then intensive training for a few weeks followed by weekly sessions for a year or more. Frequency of sessions diminished as the child's performance improved.
Not all families participated as conscientiously as some in this program. The relationship of therapy received to success poses a problem for further study.
Ratings assigned to each patient in each of the five categories on the Prosthesis Adjustment Scale were carefully studied. It was noted that scores in several categories were closely related to each other. With the exception of maintenance, children receiving a high rating in any given category (wearing, use, skill, acceptance) tended to rate high in the others as well. Since the areas of wearing, use, skill, and acceptance were interrelated, it was possible to compute a single total score for each child by summing the four category ratings. Since maintenance was not correlated with the other categories, it was omitted from the total score.
A total score of 8 was possible. It was noted that the obtained total scores clustered at either end of the scale. Forty-eight children received total scores of 6, 7, or 8. Only one child scored 5, and the remainder scored 4 or below. All those rejecting prosthesis scored 3 or below. Using total scores it was possible to determine whether fitting before the age of 2 produced better results than fitting between ages 2 and 5.
Eighty percent of the children fitted before age 2 rated 6, 7, or 8 while only 54% of those fitted between ages 2 and 5 rated 6, 7, or 8. Thus, it appears that fitting before age 2 is more likely to produce favorable results than fitting between ages 2 and 5. It should be noted, however, that fitting after age 2 does not predispose a child to a low score; 54% of these children received scores of 6, 7, or 8.
Since their individual category ratings were related to one another and the total score was related to age at first fitting, we would expect the scales, when taken separately, to be related to age at first fitting as well. It was found that the category most closely related to successful fitting at an early age is full-time wearing.
Skill, use, and acceptance are not so closely related to age first fitted; thus, the total score-early fitting relationship is accounted for largely on the basis of wearing. Maintenance appeared to be the poorest predictor of success in other areas or at any particular age of first fitting.
Review of all cases showed that dramatic changes in wearing pattern were rare. Usually the pattern shown during the first year persisted. Some changes occurred, but with two exceptions, these were minor or transient. Those children of school age who received a rating of 1 in wearing usually wore the prosthesis to school only. Those who ultimately rejected the prosthesis had fluctuating wearing patterns throughout the years. In no case was the parent of a child who rejected prosthesis consistent in his expectations that the child wear the prosthesis: it was left to the discretion of the child.
Full-time wearing appeared to be the most reliable index of successful early fitting. This might not hold true, however, unless sustained training accompanies wearing, as was true with this patient group. The consistent training may have provided the support important to successful prosthetic experiences.
Operating Skill And Applied Use
Scores on use and skill were closely related. Thus, it appeared that the separation of these concepts was primarily useful for evaluation of training needs and progress.
Some who rated lower in skill than in other areas had recently returned to the Project after an interval in another locale and had had no training or had only recently received a cable for hook operation. An occasional case who rated lower in use than in other areas had received no training immediately after fitting because of fitting elsewhere or emergency family circumstances. A few others experienced some early negative attitudes toward the prosthesis from their families. Although these attitudes later became more positive, the early period may have affected development of use patterns.
An analysis of use patterns provided clues concerning those who subsequently rejected prosthesis; for example, the use of the prosthesis as a "showoff" gadget or for such inappropriate activities as watching television. Several of these children took pride in all the activities they could accomplish faster and easier without prosthesis, and most of these children who later rejected prosthesis retained the awkward use patterns first seen when they were newly fitted.
Although maintenance of prosthesis is important, high scores in this category related least to high scores in any other rated category. Apparently the tendency to maintain the prosthesis in good repair is not predictive of a tendency to wear, operate well, use, or accept the prosthesis. It is possible that these children when first fitted were too young to participate in the orientation given families regarding care and maintenance of the prosthesis; also, the parents may not have fully comprehended the continuing nature of the responsibility.
That the maintenance score was not predictive of success in other areas is shown in that a large number of those rating 6 through 8 who were first fitted before age 2 needed to be reminded to get repairs, yet no family group was so negligent as to allow the prosthesis to become outgrown. Only about half of those who scored below 5 needed to be reminded to get repairs, and some of those who rejected prosthesis tended to maintain the prosthesis with little direction even though wear and use were minimal and acceptance was poor.
The children with short below-elbow amputations who were first fitted before the age of 2 received the best scores for acceptance. The most frequent indicator of limited acceptance of the prosthesis appeared to be poor communication of the parents with each other, with the child, with the community, or with professional personnel. Since the ability to talk freely and openly is such a strong indicator of acceptance, professional personnel should attempt to encourage and facilitate verbal interchange.
Those parents who have the capacity to express their feelings can be encouraged to do so, can make effective use of professional help, and are then able to communicate with others more easily. Limited ability in communication was characteristic of most of the parents and all of the children who received low total scores and was especially apparent among those who rejected prosthesis.
One important reason for lower acceptance scores by a few patients with high total scores was that the parents did not assume responsibility for supervising the prosthetic program; but these children, for whatever reasons, were able to continue to wear and use their prostheses well without strong parental support.
In contrast, those children with low acceptance scores and low total scores apparently could not continue to function well without parental support; these parents gave only passive support, preferring to have the child wear and use the prosthesis as he wished and for others to provide encouragement. For example, one child in this group rejected the prosthesis only three months after the first fitting. The mother strongly rejected all recommendations of the staff, although six years later she returned and requested refitting for her child. This mother now approves of her child wearing a prosthesis and meets appointments but is still reserved in her support of the program.
It was observed that children rating high in acceptance who had become full-time wearers and skillful and spontaneous users of their prostheses expressed pleasure and satisfaction in the things they were able to accomplish with the prostheses. Their activities tended to be appropriate ones for their age and community circumstances. Their parents expressed belief that this pattern started so early would carry through their child's life into adulthood.
Nine children In this group rejected their prostheses, and six of these have become inactive in the Project. These nine children rejected prosthesis for a variety of reasons. Of those fitted before age 2, one's mother almost immediately objected to the prosthesis and terminated the program. Another parent remained passive about the value of the prosthesis for five years and then terminated the program. Two other children have retained their prostheses, although they are not worn or used, but have not admitted their rejection. Neither parent of these children takes any stand about the prosthesis except to consider it the child's decision to wear and use it. One of these parents has admitted some negative feeling about the prosthesis but wishes to go through the motions of continuing visits to the clinic in order to feel that she is doing "the right thing."
In the 2 to 5 age group, those who rejected prosthesis showed the same general patterns as those fitted earlier. One family remains on the verge of rejecting prosthesis; the child has numerous other medical problems and, because of her long stump, receives minimal functional gain from the prosthesis except for a few selected activities. The family resists suggestions that the prosthetics program be discontinued, seeming to need to continue the present pattern.
Two other children and their parents showed strong initial interest in the prosthesis, but as the novelty wore off their attitudes changed. One of these mothers showed resentment toward the prosthesis: in her mind it branded her child as "crippled." The other child was poorly disciplined and showed resistance to wearing. His parents were unable to set limits for him in other ways, and this was also true relative to the prosthesis. The prosthesis became the focus of parents and child in their struggle to control each other and created so much anxiety that the parents requested the program to be discontinued.
A fourth child resisted the prosthesis and training very strongly. She was quite spoiled and withdrawn; her mother could not handle her or the prosthetic program and the prosthesis remained in the closet unused.
A fifth child, also poorly disciplined, used the prosthesis only for showing off. He and the family stressed his independence without prosthesis, and despite numerous attempts by professional personnel to work with the parents and child, the program was terminated.
For these families, termination of the program provided feelings of relief and freedom. It was considered that continuation of the program under such circumstances would be harmful to the child; he was caught between a professional staff expecting him to wear and use the prosthesis and parents who did not actively support this. In some instances, the parental lack of support was mostly a passive attitude, but the child was sensitive to this. He could not be expected to disobey or disappoint his parents in even their unspoken desires; he tested their attitudes and then rejected the prosthesis. In such cases the professional staff makes it possible for the family to withdraw from the program.
In general, this group was characterized by lack of parental support and lack of guidance in the child's general behavior. Emphasis was on accomplishments without prosthesis. These parents expected less of their children than their potential and openly expressed dislike of the appearance of the prosthesis. As might be expected, all of the parents in this group had limited ability to communicate feelings and problems-or did so in a negative manner.
This study confirms the clinical impressions that fitting the unilateral congenital below-elbow amputee be-for the age of 2 tends to result in full-time wearing, good skill, use, and acceptance of prosthesis. It indicates that the chances for success are greater if the child is fitted before the age of 2 than if he is fitted between ages 2 and 5.
Scores on the separate rating categories of the Prosthesis Adjustment Scale were closely related to one another with the exception of maintenance.
Good habits of care and maintenance of the prosthesis were least related to successful early fitting. This study suggests the need for greater stress on parent and child responsibility in this area, as it is not an expected concomitant of success in other areas.
Full-time wearing was the most closely related category to high total score. Thus, it appears to be the most reliable indicator of successful early fitting of the unilateral below-elbow amputee.
The tendency for scores in most categories to relate closely minimized the distinction between skill and use in this study, as both related to the other rated areas in the same way. The distinction appeared to be useful for diagnosis of problems by the therapist but requires finer measures than were included in this study.
The study indicates that acceptance of prosthesis is closely related to the ability to communicate. The more appropriate and positive the communication between parents and child, the more likely will there be effective communication between them and the professional personnel, resulting in greater acceptance of the prosthetics program. This suggests a need for continued emphasis on the use of the special skills of the social worker to foster rapport and to help work out problems which block effective communication.
The Prosthesis Adjustment Scale, omitting the section on Maintenance, appears to be a useful means of comparing one group of amputee children with another or of evaluating a given amputee population. Although in this study it was limited to one upper-extremity type, it is suggested that it might be useful with others.
Children with high acceptance scores and high total scores experienced pleasure and satisfaction from their prostheses. They and their parents, together with the high percentage of successful fittings shown in this study, lead the authors to conclude that early prosthesis fitting for the congenital unilateral below-elbow amputee is a highly beneficial procedure.
The authors wish to acknowledge the assistance of Lila Beal, M.S.W., Jeannine Dennis, O.T.R., and Joan Thue, O.T.R., in assigning acceptance ratings and of John Hill, Ph.D., in assessing the results. Jeannine Dennis is also thanked for her interest and assistance throughout the study.
Definition of Terms on the Rating Scale Wearing
2: Regular full-time wearing.
Frosthesis is applied on arising or while dressing and is worn all day. It is removed on retiring at night and for short periods of participation in rough sports or for naps.
1: Irregular or part-time wearing.
Prosthesis is removed for long periods for reasons other than naps or rough sports. Child may wear it regularly to school but not at home or just for certain activities there.
0: No wearing.
Child refuses to wear or wears rarely or for very inappropriate activities.
2 : Adept and refined operation.
Child operates the components smoothly and with precision for his age. For example, wrist unit is correctly prepositioned; terminal device is opened correct amount for object to be held; no residual tension is held on the cable after closing the terminal device; object is positioned in the terminal device with good stability and vision for use; body motion used to operate control is smooth and not exaggerated.
1: Needs improvement in skill: operates awkwardly.
There are flaws in skill such as: incorrectly prepositioning wrist unit; opening or closing terminal device in a studied or awkward manner; opening too widely for object to be held; retaining unde-sired tension on the cable; placing object poorly in hook, moving body awkwardly for control operation.
0: Very poor or unable to operate.
Child has difficulty or needs assistance in opening and/or closing the terminal device, requires assistance grasping objects or in any way demonstrates that it is not an independent or practical activity for him.
2: Includes spontaneously and appropriately in activities.
Arm movements are natural and unstudied, and motor patterns are similar in smoothness and rhythm to those seen in children with two sound arms performing the same task. The arm with the prosthesis is the assisting or nondominant one; this is observed in both gross and fine activities.
1: Forgets to use but will include if reminded; some inappropriate use.
Arm with prosthesis is held and used in a stiff, studied, or awkward manner so as to call attention to it. Arm may be used inappropriately, such as holding objects in bent elbow, axilla, or teeth rather than in the terminal device, or it may be held at the side and ignored. Even if these patterns are improved when the child is reminded, the observer is left to doubt that this improved use is practiced in unsupervised situations.
0: Does not include in activities.
When presented with an activity and not directed in proper prosthesis use, the child proceeds to accomplish entire activity ignoring prosthesis. Reminding produces only momentary inclusion.
2: Seeks prompt repair: good daily upkeep.
Family checks child's stump, prosthesis fit, and function regularly. Prosthesis and harness are kept clean and in good repair. Broken cables are sent for immediate repair while spare is worn. Family and child assume full responsibility for getting needed repairs.
1: Gets repairs if reminded.
Family does not take initiative in seeking repairs. Even when child complains or prosthesis ceases to function, they look to others to direct them before seeking repair. Physician, therapist, or teacher may assume this role. Once directed, family gets repair or takes steps to get new prosthesis .
0: Does not seek repair; poor daily upkeep.
Family neglects to have repairs made even if reminded. Arm and harness are left dirty; broken cables are lost; and much guidance is needed to get family to meet requirements for getting new prosthesis.
2 : Family has realistic expectations of child and prosthetic program.
Expectations are in line with child's abilities--neither too high nor too low--in relation to general behavior and development as well as to prosthesis wear and use.
2 : Child is well disciplined.
Child displays spontaneity but is manageable by others and shows some self-discipline.
2: Communication is free and factual.
Parents and child communicate with each other and with the community and professional personnel in relation to the amputation and prosthesis as well as other things. They can talk freely and answer questions factually with neighbors, relatives, teachers, playmates and curious onlookers.
2: Family stresses functional value of prosthesis over appearance.
Child's achievements with prosthesis are more important than cosmesis.
2: Family assumes responsibility for sustaining prosthetic program.
Family meets appointments, makes certain that prosthesis is worn and maintained properly, and encourages the child to use the prosthesis for appropriate activities. They are alert to problems and bring them to the attention of the professional personnel as necessary.
1 : Family has excessively high expectations for child or prosthetic program.
Child is pushed into activities beyond his developmental readiness, sometimes in a desire to see him overcompensate for his loss by excelling in other areas. Family may expect the prosthesis to be a more complete replacement than is possible.
1: Child lacks spontaneity.
Child is highly controlled, responding in a mechanical manner to all commands. He tends to be conformist in all areas and needs to strive for perfection in his work.
1: Communication is limited or evasive.
Responses are limited or evade the issue. Parents give limited answers to questions of child, who, in turn, is uncomfortable answering the questions of playmates. There is disturbance over reactions of strangers, and child may hesitate to tell parents about questions he is asked or problems he is having.
1: Mixed feelings about appearance.
Parents are unsure about the appearance of the prosthesis. Child may wear the prosthesis but sense the parents' reservations.
1: Require guidance to continue prosthetic program.
Family keeps appointments for repairs or other care as directed. They await directions from others rather than taking initiative to care for problems. Child gets primary support for wear and use of prosthesis from professional persons rather than from parents.
0: Family expects very little of child and prosthetic program.
Parents do things for the child which he is capable of doing for himself. He is not expected to be independent and may be favored over other siblings. Family may point to things child does better without prosthesis than with it but may continue with prosthetic program because they feel it is the right thing to do.
0: Child is unmanageable.
Child is undisciplined. Parents tend to be indecisive about rules, seem fearful of "crossing" child, and make many excuses for his behavior. There is no expectation that he will behave well. Child is confused and rebellious when directions, limitations, or expectations are indicated by others.
0: Communication is negative or distorted .
Comments and questions are answered with a distorted story or with anger and negativism. When the child is asked about the prosthesis, he may try to strike or threaten to strike the person, or he may retort with abusive language which provokes teasing and hitting.
0: Appearance is unacceptable.
Parents try to cover prosthesis with long-sleeved clothing. They may pick on numerous little things about the prosthesis for complaints. There is great concern about where and when the prosthesis should and should not be worn.
0: Take no responsibility for the prosthetic program.
Appointments are missed without reason and often without calling to cancel them. Parent may "become ill" at each appointment time, or feel that training, repairs, etc., are not important and simply ignore them. Assistance from the professional staff in organizing transportation, making extra phone calls, etc., produces few results.
Milo B. Brooks, M.D. and Julie Shaperman, O.T.R. are associated with the Child Amputee Prosthetics Project at the University of California at Los Angeles Los Angeles, California