Preliminary Prosthetic Survey Evaluation of Former CAPP Patients Residing in Mexico

Sophy Puth

08/01/02

ABSTRACT:

A preliminary outcomes evaluation was conducted on 24 former CAPP (Child Amputee Prosthetic Project) patients residing in Mexico. Closed files were collected and reviewed for general patient information between 1990-2001. Questionnaires were sent out to 67 qualified individuals and of these, 24 responded back. It was revealed that 92 per cent of the respondents continue to use their prostheses regularly while only 2 cases totally abandoned them. The two primary concerns of the respondents regarding their current prosthetic care include the reality that they could not afford a new prosthesis and that they were not aware of any prosthetic shops near by. The average wearing time per day of those who continue to wear their prostheses was 11.44 hours. All but one respondent stated that their prostheses helped them with their daily and work activities. This report is far from conclusive due to the low number of responses, but it does show that many former CAPP patients from Mexico have benefited greatly for several years from the prosthetic services they received from the Shriners hospital in Los Angeles.

INTRODUCTION

It has been estimated that the great majority of the world's amputee population live outside the borders of developed nations. Many organizations and agencies have worked hard in an attempt to meet the growing needs of the disabled around the world. Still, it is also known that many individuals with prosthetic needs are not being sufficiently served. Americans have close neighbors who have been living under such conditions in Mexico.

The Shriners Hospital for Children is one organization that has tried to reach out to those disadvantaged children who for whatever reason cannot meet their varied medical needs including limb deficiencies. At the CAPP department in the Los Angeles Shriners Hospital, a team of physicians, therapists, and prosthetists, prescribe, evaluate, fabricate, fit, and train a large number of limb deficient children from infancy to eighteen years of age. Of the more than 600 active files at CAPP, it is estimated that at least forty percent come directly from northern Mexico via special medical visas. In consideration of the difficult challenges facing the patients from Mexico, the hope of CAPP is that the prostheses provided for them will be tools that they will use to improve their standard of living. That it will give them opportunities to gain employment and independence and perhaps even improve their self-image and confidence throughout their lives.

However good these intentions are, little is known regarding the outcome of these individuals once they are discharged from CAPP. The purpose of this survey study was to evaluate the short and long-term effectiveness of the prosthetic services provided by the CAPP department to the children who came from Mexico.

The main questions in this study were: were these former patients who were good prosthetic users while receiving care at CAPP still wearing their prostheses years after discharge, what were the factors that caused an increase or decrease in the usage of the prostheses, and ultimately, were the services provided to these children by CAPP beneficial to them once they became adults and could no longer rely upon Shriners care for their prosthetic needs?

Scotland and Galway reported in their long-term review of children previously fitted with upper limb prostheses in Ontario that the highest rate of abandonment was at the age of 13 years as the children became more aware of their cosmetic appearance [7]. Therefore, since the inclusion criteria for the subjects of this study required that they were consistently wearing their prostheses at least up to age of 18 or adulthood when they were discharged from CAPP, it was hypothesized that the percentage of those currently wearing their prostheses should have been relatively high.

METHODS

Closed medical records of former CAPP patients who came from Mexico were collected and reviewed to gather general information about each patient. The information pertinent to this study included the patient's name, personal phone numbers and addresses, gender, description of limb deficiency, and their prosthetic wear pattern. The inclusive criteria for this sample population was defined as any person residing in Mexico, male or female, who had been previously treated for prosthetic fittings at CAPP in Los Angeles and whose cases have consequently been closed due to age restrictions. Currently, the typical age range that children would be eligible for treatment at the Shriners hospital is infancy to 18 years of age, however many patients at CAPP had been treated up to their 21st birthday. The potential subjects needed to have been residing in Mexico at least up to the date of discharge. In addition, due to the focus of the survey it was necessary to exclude those patients who were not wearing consistently at the time of discharge. A total of 51 cases were excluded from the 118 initial files collected between 1990-2001. A follow up survey questionnaire was sent out to 67 former CAPP patients residing in Mexico. This was an arduous task, partly due to the less than efficient pace of the mailing system in Mexico, as well as, the difficulties of locating current residences of former patients. Of the 67 qualified individuals, 24 responded to the questions via a standard survey questionnaire that was administered either by verbal phone interviews and/or by mail. All administration and collection of data was done in Spanish. An example of a survey questionnaire is shown in figure A. The list of questions included: their current and former activity levels, how often they were wearing, how were repairs handled, was their prosthesis helping them, and if they were not wearing, why not?

The subjects wear patterns were categorized based on the number of hours the prostheses were worn each day and the relative activities the subjects were involved in.

Figure A Copy sample of CAPP follow up survey questionnaire

RESULTS

24 survey responses were collected: 17 subjects in the acquired group (71 percent), and 7 in the congenital group (29 percent).

The levels of deficiencies are recorded in Tables 1 and 2.

Table 1 Level of congenital deficiency in 7 former patients

Table 2 Level of acquired amputations due to disease or trauma in 17 former patients. Note: The patients with both upper and lower extremity prosthetic needs were counted separately hence 19 distinct cases were charted here

At the time of completion of this review in July 2002, 22 former CAPP patients (92 percent) were still wearing their prostheses. The 2 individuals who were not wearing had several things in common including age, gender, etiology, marital status, and year of discharge. In addition, both had acquired traumatic bilateral deficiencies. However, they were also very different including the fact that one had amputations involving the upper extremities and the other, lower extremities (included in Table 3). There were 9 patients (35 percent) who were currently using their prostheses less than they did at the time of discharge from CAPP. Of these, 6 had traumatic causes and 3 had congenital causes (Table 3). Employment is an important factor that helps determine success or failure relative to prosthetic care at CAPP. Of the 24 cases, 21 individuals (88 percent) were either employed, working full-time, or attending college. 20 out of these 21 individuals stated that the prostheses helped them with their daily and work activities. Examples of recorded employment included supervisors, drivers, business managers, auto mechanics, construction and receptionists. 6 individuals were married and 5 of the 6 individuals had children.

Figure B shows the high rate of prosthetic use reported for work and school (79 percent) and a relatively low rate of use for sports (13 percent) and other social activities (30 percent).

Figure B Summarizing the patterns of prosthetic use in 24 patients

Table 3 Analysis of all patients who are using their prostheses less than they did at time of discharge. Note: The cases marked with * had either significantly less wearing time or were not wearing at all.

Figure C Wear patterns of prosthetic use in 24 former CAPP patients. Cases were divided into 4 groups by the number of years since discharge from CAPP. Each was plotted against the total number of cases, 26 in all. Each grouping was organized by the frequency of their current wear pattern relative to the wear pattern at the time of discharge. That is, if the subject's wear pattern was categorized as being the "same", this would represent a current wear pattern that is relatively equal to the wear pattern at the time of discharge. The data was based on the number of hours the prostheses were worn each day and the relative activities the subjects were involved in.

From Table 4 it is evident that the top two potential obstacles for consistent prosthetic use were the lack of local prosthetic shops and financial constraints. The primary reason given by the 9 individuals who have decreased wear patterns was a lack in the availability of local shops. The second most listed obstacle for this subgroup of decreased users was that wearing the prostheses presented too many hassles.

The average time that the 24 former patients wore their prostheses was 11.44 hours per day (see Figure D). The average length of time elapsed since discharge was 4.25 years.

Table 4. The listed potential obstacles given by the respondents for consistent prosthetic use

Figure B Summary of hours per day that prostheses were worn. Male cases averaged 12.1 hours a day. Females averaged 11.6 hours a day. Lower limb cases averaged 12 hours a day. Upper limb averaged 13.1 hours a day. The bilateral amputees averaged 8.4 hours a day.

Prosthetic repairs are necessary and unavoidable: 10 cases reported that they make their own repairs, 5 cases reported going to local prosthetic shops, 3 cases reported that family or friends did the repairs, while 6 cases reported that there was not yet any need for prosthetic repairs. There are associated costs involved in making repairs and/or replacing the prosthesis themselves. All 24 cases reported that either they or their families paid for their prosthetic needs. None of them reported any government or local agency financial assistance for their prosthetic needs.

DISCUSSION

Burgess, et al., in his 1977 long-term survey of 134 adult lower limb amputees, reported that 91 percent of the patients continued to wear their prosthesis regularly [1]. Although it is difficult to make any decisive conclusions based on this preliminary study performed on former CAPP patients, the trend shown within the data collected (92 percent) is optimistically consistent with Burgess' findings. The results of this study supports the hypothesis stated in the introduction. That is, since these subjects were consistently wearing their prostheses as young adults when they were discharged from CAPP, the percentage of them currently wearing their prostheses would be relatively high.

Burgess also reported that those who discontinued the use of their prosthesis stated among their reasons: poor prosthetic fit, and the inability to afford a new prosthesis [1]. Poor prosthetic fit was not a significant complaint of the subjects in this study. This could be due to the relatively low discharge elapsed time among the subjects surveyed, as 11 subjects (46 percent) had been discharged within 3 years of the time this study was conducted.

Financial constraints were reported by 58 percent of the former CAPP patients surveyed, but it was not reflected in their rate of discontinuation. This could be connected with the findings that 13 out of 24 subjects reported that either themselves or a family member performed their own prosthetic maintenance, thus eliminating the potential costs of regular visits to a prosthetic shop. Since no financial support was reportedly given by other government or private agency regarding their prosthetic needs, it is imperative that the patient population from Mexico be provided with the tools and the education on how to enhance the longevity of their prostheses. This reinforces the unwritten policy among CAPP prosthetists that special prosthetic repair and maintenance training be given near the time of discharge. Special training should, however, be limited to those patients and families who display sound judgment and some ability to do minor repairs themselves. In addition, based on the findings of this preliminary report, it is recommended that more emphasis be given to those patients from developing countries regarding the issuing of extra supplies during their exodus from CAPP such as socks, cables, pads, straps, Velcro, and all other supplies deemed appropriate within the allowances of the budget and the discernment of those responsible.

Among the other significant obstacles reported by the population surveyed was the lack of local prosthetic facilities available for maintenance and repairs (63 percent). This information is somewhat skewed since 6 cases reported that they had not yet needed any prosthetic repairs. Furthermore, 13 subjects (54 percent) stated that they did know of at least one prosthetic facility in Mexico. Therefore, in terms of the availability of prosthetic facilities, the problem may be that these facilities are not locally available or accessible to these former CAPP patients. One speculation is that a lack of transportation options in developing countries prevents many from receiving professional prosthetic care.

Based on the results of this survey, it is reasonable to conclude that within the low discharge elapsed time span of 1-12 years, CAPP has been successful in assisting the majority of these 24 individuals from Mexico with limb deficiencies. This is evident because most of those surveyed were employed or attending university, most were still wearing their prostheses, and seemed to be quite independent with daily activities. Most subjects gave credit to their prostheses in helping them with their daily and work activities. Furthermore, it is important to note that they valued their prosthetic needs enough to find creative ways to maintain them, despite financial constraints.

This study did not reveal definitive conclusions as to why such a large percentage (92 percent) of this sample population was still wearing their prosthesis. There were no significant differences in wear patterns found in this study when comparing gender, age, or level of deficiency. Therefore more long-term follow-up studies are recommended. More questions need to be asked and many more variables need to be considered. However, the current results are promising and the work of the CAPP department does appear to be benefiting the patients coming from Mexico, at least, for the short term.

As Kuyper, et.al., stated in their study of prosthetic management of children from the Netherlands, the challenge of responsible prosthetic prescription is to adapt continuously to the child's changing physical and psychosocial growth and their newly developing skills [4]. In addition, physicians, prosthetists and therapists need to be ever sensitive to the unique needs and obstacles of those patients residing in other cultures and countries. After all, if health care professionals are to treat the whole person, and not just the limb, then they must continually strive to equip each individual appropriately according to their unique needs.

REFERENCES:

1. Burgess, E.M., Kegel, B., Carpenter, M.L. A Survey of Lower-Limb Amputees: Prostheses, Phantom Sensations, and Psychosocial Aspects. Bulletin of Prosthetics Research 1977; 10(27): 43-60.

2. Burrough, SF. Patterns of Acceptance and Rejection of the upper-limb Prosthesis. Orth and Pros, 1991; 39:2:40-7.

3. Huang, ME, Levy CE, Webster, JB. Acquired limb deficiencies. 3. Prosthetic components prescriptions and indications. Arch Phys Med Rehabil, 2001;82:s17-s24.

4. Kuyper, M-A, Breedijk, M., et.al. Prosthetic management of children in the Netherlands with upper limb deficiencies. Prosthetics and Orthotics International, 2001; 25:228-234.

5. Lake, C. Effect of Prosthetic Training on Upper-Extremity Prosthesis Use. Journal of Prosthetics and Orthotics, 1997; 9:1:3-9.

6. Postema, K, Donk, V, Limbeek, J, et.al. Prosthesis rejection in children with a unilateral congenital arm defect. Clinical Rehab, 1999;13:243-249.

7. Scotland, T.R., Galway, H.R. A Long-Term Review of Children with Congenital and Acquired Upper Limb Deficiency. The Journal of Bone and Joint Surgery 1983; 65-B(3): 346-349.

8. Sener, G, Yigiter K, et.al. Effectiveness of prosthetic Rehabilitation of children with limb deficiencies present at birth. Prosthet Orthot Int, 1999;23:130-134.

9. Setoguchi, Y, Rosenfelder, R. The Limb Deficient Child. Charles C Thomas publisher, 1982.