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Physical Appearance of Prosthesis after Syme/Boyd Amputation versus Van Nes Rotationplasty in Adults with Proximal Femoral Focal Deficiency (PFFD)


Abstract

Largely due to the abnormal appearance, the birth of a child with PFFD often engenders feelings of guilt, disappointment, fear and anxiety in parents and physicians alike. This negative reaction to the child's abnormal appearance continues through adolescence and into adulthood. A child affected by such a negative reaction to his appearance will find it much harder to experience the joys of childhood. Thus, as the child grows, he lacks the social skills and confidence that his peers have. This, coupled with the abnormal appearance, may affect future social successes in such varied areas as romance and career advancement. As a result, physical appearance must be taken into account when determining whether a patient should get a Syme/Boyd Amputation versus a Van Nes Rotationplasty procedure.

Three PFFD amputees were recruited for the study: 1) after Van Nes Rotationplasty; 2) after Boyd Amputation; 3) initially, Van Nes Rotationplasty, then 2 years later - Syme Amputation. Photographs of amputees from waist down were taken from 3 angles: front, prosthesis side of the body, back. Two different Questionnaires were composed: for amputees and for the independent viewers.

One hundred and seven (107) adult subjects were recruited. The Independent Viewers were shown photographs of PFFD patients, first, with prosthesis after Van Nes Rotationplasty amputation, and second, with prosthesis after Boyd amputation. The subjects had been asked to complete a questionnaire giving their opinion of the physical characteristics of the prosthesis and physical appearance of the people in the photographs. The amputees were asked to fill out the Amputee Survey over the phone interview.

The result of this research indicates that superior physical appearance of the prosthesis after Boyd/Syme Amputation has a positive impact on the social, professional, and private life of a patient. The purpose of this research paper is to aid orthopaedic surgeons and all who are involved to make the best surgical and prosthetic management decision for patients with PFFD, to improve their social acceptance and to make their life easier.

Introduction and Background

Proximal Femoral Focal Deficiency (PFFD) is a congenital limb deficiency involving the proximal end of the femur and the hip joint, resulting in limb shortening and articular dysfunction Functional limitations vary greatly and optimal treatment planning demands accurate and early (e.g., childhood) classification into prognostic groups. Depending on the disease severity, management ranges from supportive prostheses to lower extremity amputation with complex partial surgical reconstruction.

Numerous classification systems have been devised to categorize PFFD. The most commonly used system is the Aitken classification. In this system, PFFD is classified into four types by radiographic appearance of the proximal femur and acetabulum ( Fig. 1A , Fig. 1B , and Fig. 2 ).

In category A all proximal components of the femur eventually ossify with severe subtrochanteric varus, often with pseudarthrosis. In category B the head of the femur is in a competent acetabulum, but there is never bony or cartilaginous continuity between the shaft and head. In category C there is no head of the femur, no acetabulum, and no apophysis at the proximal end of the femur. In category D there is no acetabulum and no head of the femur; the femoral segment is abnormally short and severely flexed with no proximal femoral apophysis (D is the group in which the major number of bilateral cases is seen).

Treatment options for PFFD are even more numerous than classification systems. Several important orthopaedic issues should be considered when formulating a treatment plan. These include ultimate limb-length discrepancy, joint instability, inadequacy of musculature, and malrotation.

Fig. 3 | Fig. 4 | Fig. 5 | Fig. 6 | Fig. 7 | Fig. 8 | Fig. 9 | Fig. 10

One treatment option is Van Nes Rotationplasty, enabling the use of a below-the-knee prosthesis. Rotationplasty was first described in 1930 by Borggreve, who performed a rotation through the femur. Van Nes described his technique in 1950, rotating the foot 180° through the tibia so that the toes point posteriorly and the ankle functions as a knee. The ankle must have at least a 60° arc of motion and should be at the same level as the opposite knee. The gastrocnemiussoleus complex acts as an extensor of the new knee and can help to limit heel rise of the prosthetic lower segment. The Rotationplasty may gradually derotate with growth, making repeated surgeries necessary. Several modifications have been described later by Torode and Gillespie, Kritter and Krajbich.

Another treatment option is a Syme procedure – through-ankle disarticulation that maintains the heel pad with or without knee arthrodesis, creating a functional transfemoral amputation. A Boyd amputation retains the calcaneus, which is fused to the tibia. A modified Syme disarticulation or Boyd amputation will create a residual limb suited for prosthetic fitting and weight bearing.

Intuitively, one would expect that foot preservation with below-knee function in PFFD would yield a better result compared with the more widely used knee fusion and foot ablation that results in above-knee function. However, because patients with PFFD, in contrast to other amputees, exhibit associated defects in hip musculature, external rotation contractures, and leg and foot anomalies, the situation is often more complex.

To aid with prosthetic fitting, when the knee is situated close to the hip and surgical treatment beyond simple leg lengthening is entertained, a knee fusion with or without ablation of the foot by Syme/Boyd amputation has become the most widely used procedure.

However, prosthetic fitting ease should not be the only factor to be considered when choosing between Syme or Boyd amputation and Van Nes Rotationplasty. After all, a PFFD patient – like every other human being – seeks to improve his or her quality of life. Quality of life includes both physical comfort and social acceptance.

Social acceptance is often linked to physical appearance, especially in children. Children who have the misfortune of being deformed in some way often find it hard to be accepted by their peers. Thus, as the child grows older he or she lacks the social skills and confidence that his peers have. This lack of social skills, coupled with the abnormal appearance, may affect future social success in such varied areas as romance and career advancement. As a result, physical appearance must be taken into account when determining whether a patient should get a Syme Amputation versus a Van Nes Rotationplasty operation.

The purpose of this research paper is to aid both orthopaedic surgeons and patients with the decision-making process by providing them with an unsearched, yet important, variable: a lay person's opinion of which surgery results in the most physically pleasing outcome.

It is hypothesized that in relation to overall physical appearance the results of the Syme/Boyd Amputation are better than those of the Van Nes Rotationplasty, because the Syme/Boyd Amputation outcome is more aesthetically pleasing and less noticeable than that of the Van Nes Rotationplasty, and therefore, the patient is less likely to suffer socially.

Previous Investigators

Research in the field of physical appearance for people with prosthetics has not been extensive. There have been studies, however, that touch on related issues such as physical self-image, self-perceived social acceptance, a comparison between amputee gait and non-amputee gait, and a comparison of energy expenditure for Symes Amputation versus a Van Nes Rotationplasty.

Setoguchi Y. and Varni J.W. (1991) investigated the self-perceived physical appearance in children and adolescents with congenital or acquired limb deficiencies. As part of the overall Child and Adolescent Needs Project at the UCLA Child Amputee Prosthetics Project, the authors developed the Degree of Limb Loss Scale (DLLS). The children's' and adolescents' age and sex were not significantly correlated with their self-perceived physical appearance. There was a statistical trend (r = -.21, p = .07) for the children's group to have a lower score of self-perceived physical appearance as they grew towards adolescence. Also, total degree of limb loss was not significantly correlated with self-perceived physical appearance. The major limitation of this study is that it does not address whether specific types of limb deficiencies and specific prosthetic design characteristics affect self-perceived physical appearance in children and adolescents with limb deficiencies.

Fig. 11 | Fig. 12

Wallander and Varni (1998) touched upon the psychological problems faced by children with chronic physical disorders. The goal of the study was to analyze a wide sample of research conducted on the psychosocial effects of pediatric chronic physical disorders on children and their families. This paper shows the importance of the proposed study by recognizing "the negative values physically healthy children hold about visible handicaps, which may influence their behavior and projected attitude toward children with limb deficiencies." Thus, it is of major importance for a child's social well-being to choose a surgery that healthy children will find most physically pleasing. The major conclusions of this paper are that many children and families suffering from chronic illnesses share the same adjustment issues. The major shortcoming, one which the authors recognize, is that there is not enough research on this area to conduct a thorough analysis on the effects of pediatric chronic physical disorder on child and family adjustments.

Alman et al (1995) sought to objectively: 1) evaluate the perceived physical appearance, gross motor function, and metabolic energy expended in walking after Symes Amputation and after Van Nes Rotationplasty for the treatment of proximal femoral focal deficiency, and 2) to determine whether either reconstructive procedure had any specific advantages or disadvantages. The authors found no significant differences with respect to the Rand Health Insurance Study scores, the Denver profile, or the metabolic energy cost. The operative procedure is probably less of a factor in the perception of physical appearance than is the home and school environment. The parents' active role in choosing the treatment may help to foster a more supportive home environment. The authors believe that many patients who have had a Rotationplasty do not consider themselves as amputees, as they have retained the foot, in contrast to those who have had a Syme amputation, and have lost the foot. This may also play a role in the findings with respect to perceived body image. Understandably, the researchers found it difficult to assemble a large group of patients with this rare disorder in order to compare the different types of treatment.

Another researcher (Fowler et al, 1996) reported on a more in-depth comparison of energy expenditures between the different surgeries available to PFFD patients. The goal of this paper was to relate the subject's age and the type of operation to the oxygen cost during walking. Dependent variables (the speed of the treadmill, the oxygen uptake rate, and the heart rate) were also evaluated. This paper relates to my research in that the more energy one spends walking, the sweatier and more tired one becomes. Exhaustion, obviously, affects physical appearance. The paper concluded that when the subjects walked at their preferred speed, the energy expended for a given distance was significantly greater for those who had received a Syme amputation versus those who had received a Van Nes Rotationplasty. In addition, the advantage of a lower metabolic cost associated the Van Nes procedure was apparently maintained even when postoperative rotation had occurred and the patient used the subtalar joint rather than the ankle joint to actuate the knee of the prosthetic limb.

Methods

Three PFFD amputees (all are female and living in Russia at the time of data collection) with only unilateral amputation, without multiple anomalies were recruited for the study:

  1. modified Van Nes Rotationplasty (category B by Aitken);
  2. Boyd's Amputation (category C by Aitken);
  3. initially, Van Nes Rotationplasty, then 2 years later - Syme Amputation (category B by Aitken).

Two different Questionnaires were composed and translated from English into Russian language by the principal investigator, whose native language is Russian:

  1. for amputees;
  2. for the independent viewers.

Self-assessment of physical appearance questionnaire will be written using the Orthotics and Prosthetics Users' Survey (OPUS), the Prosthetics Evaluation Questionnaire (PEQ), and a Survey of Amputees: Functional level and Life Satisfaction (see Fig. 13A , Fig. 13B , Fig. 14A , and Fig. 14B ). Each amputee was asked to fill out the entire Survey, however only the section assessing the ‘prosthesis appearance' is of principle interest to this study. Subjects were consented and interviewed by phone.

Photographs of amputees #1 and #2 from waist down wearing similar clothing were taken from 3 angles:

  1. front;
  2. prosthesis side of the body;
  3. back.

One hundred and seven (107) adult subjects who had no prior contact or experience with amputees were asked to participate in this research project. They were recruited from several different public places and cities in Russia. Pictures with and without prosthesis were done only for Patients #1 and #2. Only the pictures with the prosthesis were shown to the Independent Viewers in order to avoid any possible negative bias a lay observer might have from viewing a residual limb without the prosthesis: first, with prosthesis after Van Nes Rotationplasty amputation, and second, with prosthesis after Boyd amputation. The subjects had been asked to complete a questionnaire giving their opinion of the physical characteristics of the prosthesis and physical appearance of the people in the photograph.

The investigators were careful not to bias the subjects by phrasing of the questions. Thus, the first half of the Questionnaire dealt with their opinion of the patients' physical appearance. The second half of the Questionnaire focused on the subjects' characteristics, such as age, gender, marital and social status and educational background. This separation between the first and second halves was intended to keep the subjects from being self-conscious about these qualities when deciding on physical appearance of the person in the photograph.

The data was collected, reviewed and analyzed. All research was done according to the Rules of Health Department for Research in Prosthetics and Orthotics in the Russian Federation.

Results

Amputees

Patient #1 has a child but is currently single, never been married and is living in her parents' apartment with her child. Patients #2 and #3 are married, have children (2 and 1), and live independently in their own homes. In addition, Patient #2 has higher educational credentials.

Patient #1 reported that the physical appearance of her prosthesis had negative impact on her professional position. Specifically, she was ever given jobs where she could meet the public, and sometimes she was not given a job at all or was denied raises and promotions. In addition, Patient #1 stated that her prosthesis sometimes negatively affected her social and private life, and that she is somewhat satisfied with Physical Appearance and function of her prosthesis, but will go thru same procedure again.

Patient #3 (when she had Rotationplasty) was not satisfied with cosmesis and function of her prosthesis. And at that time Physical Appearance of her prosthesis somewhat affected her professional and private life. But after she went through Syme amputation, she is overall satisfied with all aspects of her life, as well as with cosmesis and function of her prosthesis.

Patient #2 (Boyd Amputation) is extremely satisfied with cosmesis, satisfied with function of her prosthesis, never had negative impact on her professional, social and private life.

Both, Patient #2 and #3 stated if they knew then, what they know now they would choose Boyd/Syme Amputation.

The Independent Viewers

Table #1. Independent Viewers Survey (see Table )

The total number of Independent Viewers who participated in this study was 107 (Table 1). Most of them were young adults (under 25) - 57%, never been married - 54%, 70% of responders were male, 30% - female, had a Masters Degree - 36%.

71% of the viewers liked the physical appearance of the prosthesis after Boyd/Syme Amputation and 55% said they would choose Boyd/Syme Amputation for themselves. 51% of the viewers thought that physical appearance of the prosthesis after Van Nes Rotationplasty would have a negative impact on person's chance to get a job, 41% - person's chance to get raises or promotions.

Our research indicates that superior physical appearance of the prosthesis after Boyd/Syme Amputation has a positive impact on the social, professional, and private life of a patient.

Discussion

The goal of this study was to evaluate how the specific types of procedures and the specific prosthetic design characteristics, like cosmesis, affect the physical appearance in children and adolescents who are PFFD patients.

Some difficulties encountered in the process of this research project included the following three. First, as with any study in the prosthetics field, amputee recruitment presented a challenge, especially because we focused on such a rare disease as PFFD. Second, Patient #3 did not agree to have her photograph taken (for personal reasons). Third, we were uncertain of the honesty of the Independent Viewers. As shown in the Results section, some inconsistencies were found in Independent Viewers Survey answers, and these can be explained by several different factors:

  1. 1st patient's photos are of higher resolution and therefore look better;
  2. Appearance of the sound side leg of Patient #1 is better than Patient #2;
  3. It is possible that some Independent Viewers were hasty and did not pay careful attention to the questions asked.

These are reasons for why we think some people (about 9%) checked answer "2 Photo" for the question: "Which prosthesis has better physical appearance?" but same people chose "1 Photo" for the question "Who would you feel more comfortable with in the public place?" Surprisingly, a high level of superstition was detected among the Independent Viewers. About 12% of all Subjects absolutely refused to answer which procedure/prosthesis they would choose for themselves, explaining their decision that if they acknowledge this possibility it might happen someday. Even though we were careful not to bias the subjects in the composed Surveys, some people felt uncomfortable to think, that their leg can be amputated. In future investigations this need to be addressed.

Even Patient #3 did not agree to do pictures (for personal reasons), but was willing to participate in our "Amputee Survey". We decided not only to collect this data, but to do it twice due to such unique consequences: initially she had Van Nes Rotationplasty, and a couple of years later underwent true Symes Amputation due to complications and dissatisfaction with initial results. Both procedures were done when patient was an Adult (21y.o. and 23y.o.), and she was able to clearly identify all positive and negative outcomes after both procedures. Therefore, Patient #3 filled out the Amputee Survey 1st time as an Amputee after Van Nes Rotationplasty, 2nd time as an Amputee after Syme Amputation. During the phone interview patient mentioned that she chose Van Nes Rotationplasty for higher function results, but was surprised to find the opposite (for example, kneeling was not an option for her). It is why after a prolonged rehabilitation, a lot of complications in fitting of the socket, poor and nondurable cosmesis of her prosthesis, she made the decision to do a Symes Amputation.

Our data shows that the prosthesis physical appearance and its appraisal, both by the patients themselves and by the society, is an important factor in patients' success in social, professional and private spheres of their lives. Our research shows that superior physical appearance of the prosthesis after Boyd/Syme Amputation is in turn statistically predictive of greater success in patients' social, professional and private lives.

These findings are important because they can help patients make a better and a more informed decision regarding the best procedure given their situation. The findings of our study help advance our overall goal of using empirical findings to enhance the quality of life of children and adolescents with PFFD.

Acknowledgements

The authors thank individuals who acted as expert consultants: Steve Gard, PhD, Northwestern University, Chicago, U.S.A. and Boris G. Spivak, M.D., PhD, Institute of Prosthetic Design, Moscow, Russia.

Our sincere thanks also is extended to Vladimir A. Kholopov, PhD, Moscow State Academy, Moscow, Russia and Liudmila V. Pereverzeva, M.S., Oryel, Russia for their contributions in assisting with data collection.

We also are extremely grateful to Lubov Romantseva, M.D., University of Chicago Hospitals, U.S.A., for reviewing and editing this document.

We would like to thank Bert Voskuil, CPO, Utrecht, Nederland for allowing to reprint pictures of prostheses, made by him.

We are very thankful to the individuals with PFFD who took the time to do pictures, complete the survey and share with us their personal experiences, as well as to the independent viewers for participating in this research.

The Author wishes to thank Bert Voskuil, CPO and Robert Lipshutz, BSME, CP for the reproduction of the images.

References:


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