The inspiration for conducting this survey was drawn from an article read at Century College in the Journal of Prosthetics and Orthotics in 1991.1 Two of the more interesting outcomes of this survey were that the information needs of amputees were not being filled and that many amputees were dissatisfied with their prosthetic care. As a nonamputee entering the prosthetic field, I felt that conducting this retrospective survey—with questions addressing their experiences before amputation, during prosthetic fitting and throughout the rehabilitation process—would provide first-hand input from users of prosthetic devices regarding their personal experiences as both amputees and recipients of clinical services from prosthetists. The findings of this study could then be shared with specific segments of the healthcare and prosthetic community with the intent to enhance the availability of information for lower limb amputees, both before and after amputation surgery, and to improve the overall satisfaction level with their prosthetic experience including the comfort, fit, and function of the prosthetic device and their interactions with their prosthetist(s).
The survey participants were selected as a sample of convenience. The main inclusion criterion was that the participant was a user of a lower limb prosthesis to aid in ambulation. Forty-four of the 50 survey participants were patients at the northern Alabama facility where my prosthetic residency was conducted, whereas the remaining 6 were patient models from my prosthetic classes at Century College in White Bear Lake, Minnesota. The mean age of the survey participants fell within the 50 to 59 years age group. There were nine possible age groups, such as <10 years, 10 to 19 years, up to 80+ years. All but one of the participants, 66% of whom were males, had lower limb loss through amputation surgery. The nonamputated prosthetic user presented with a congenital leg deformity resulting from maternal use of thalidomide. Eighty-seven percent of the survey participants were unilateral amputees, with 58% being transtibial amputees. On average, the individuals surveyed had been wearing prosthesis for approximately 8 years, ranging from less than 1 year to more than 40 years. Fifty-two percent of the participants had met an amputee before their becoming one themselves, with only half of the participants responding in the affirmative (or 26% of all 50 survey respondents) indicating that they had benefited from that experience. The cause of amputations for this group varied, including trauma, diabetes, peripheral vascular disease, peripheral arterial disease, infection, and cancer. Collectively, the participants of the survey had in excess of 400 combined years of experience wearing lower limb prostheses and had been treated by more than 135 prosthetists.
A 45-question survey was created (some questions having multiple parts) using mainly “yes/no” and “multiple choice” questions, while also including a few essay questions. The survey participants were asked to refer to their first prosthetist when answering questions about their interactions with prosthetists. Some of the questions were patterned after those found in the 1991 national survey of amputees,1 allowing possible comparisons to be made. The first part of the survey focused on gathering personal information such as current age, gender, age when amputation occurred, level and cause of amputation, etc. The remainder of the survey questions focused on a variety of topics relating to the participants' interactions with prosthetists and their use of a prosthesis, for example, what topics were addressed when meeting with their prosthetist before and after their amputation surgery; how comfortable they were meeting with their first prosthetist; their experiences using a prosthesis; what advice they would give to other amputees and to prosthetists; when and where they obtained their information about prosthetics; and how their prostheses could be improved. The responses from the “yes/no” and multiple choice questions for each of the 50 patient surveys were entered into Excel spreadsheets as a numeral “1” for each answer selected by the participant. For example, for a particular “yes/no” question, if the fifth participant's response was “yes,” the number “1” was placed in the fifth row of the “yes” column for that particular question. The responses to each of the 45 questions were tallied on separate spreadsheets, one for each question, each having 50 rows for data entry, one for each survey participant's response. The 50 responses for each “yes/no” and multiple choice questions were then individually summed in vertical columns, and percentage breakdowns for each possible answer for each question were calculated, resulting in the figures presented in this article. The resulting percentage figures for many of the questions were then graphed to facilitate the analysis process. The essay answers were entered into spreadsheets in an abbreviated form and are also highlighted in this article.
An unanticipated outcome of this survey (Table 1) was that some of its results very closely correlated to the results of a 1991 national survey of amputees conducted by Caroline C. Nielsen, PhD, University of Connecticut, Storrs, CT. Listed in Table 1 are some of the questions that were similar between the two surveys along with their respective survey participants' responses. For instance, in the 1991 survey, 67% of respondents reported wearing their prosthesis for greater than 9 hours per day; in the 2009 survey, 74% reported greater than 9 hours per day. The percentage of amputees choosing “comfort” and “function” as their biggest concerns for their prosthesis were 90% in 1991 and 84% in 2009. The percentage of amputees indicating that little or no prosthetic information was available either before or immediately after their amputation was 53% in 1991 and 59% in 2009. The percentage of amputees indicating that their prosthetist was their main source of prosthetic information after their amputation was 65% in 1991 and 67% in 2009. The percentage of amputees who had changed prosthetists was 56% in 1991 and 84% in the 2009 survey. The percentage of amputees citing dissatisfaction with professional skills and/or the way they were treated by their prosthetist as their main reasons for changing prosthetists totaled 58% in 1991 and 62% in 2009.
If the results of this 2009 sampling of lower limb prosthetic users is representative of the much broader national patient population, then the prosthetic profession in general and certain prosthetists more specifically would benefit from assessing the level at which the clinical needs of their patients are being satisfied. Although there were some takeaways resulting from this survey that reflected positively on the prosthetic profession and its practitioners, there seemed to be a fairly significant level of dissatisfaction among the 50 users of lower limb prostheses who participated in this survey and who, as a group, had in excess of 400 years of prosthesis-wearing experience.
Several results of this survey that stood out as being noteworthy from either a positive or a negative perspective are highlighted below.
AMPUTEES LACK EARLY ACCESS TO PROSTHETIC INFORMATION
Before amputation, 59% of survey participants indicated that they were not provided information about prosthetics. The majority of the survey participants (82%) did not talk to or meet multiple prosthetists before choosing one to treat them after their amputation. Furthermore, 73% of them relied on either a medical professional (physician, surgeon, hospital staff, etc.) or their insurance provider to recommend a prosthetist. Simply stated, many of the survey participants did not know how to locate a prosthetist on their own, especially before their amputation.
Amputees should meet prosthetists before their amputation surgery (if circumstances allow). Only 8% of the survey participants had met a prosthetist before their amputation, whereas slightly more than half (52%) said they did not meet their first prosthetist until 3 weeks or more after their amputation surgery. It should be noted that 47% of the survey participants classified their amputation surgeries as an “emergency,” and 32% indicated the cause of their surgery as being an “accident or trauma.” For this portion of the survey participants (at least 32% of the total), this certainly would have limited their ability to contact a prosthetist before their amputation. The fact that approximately one third to one half of those individuals surveyed did not have an opportunity to meet a prosthetist before their amputation because of an emergency or due to the nature of its cause still does not explain why such a large percentage (52%) did not meet their first prosthetist until 3 or more weeks after surgery.
THE MAJORITY OF SURVEY PARTICIPANTS FELT LIKE “PATIENTS”
When asked how they felt when first meeting a prosthetist, 70% of the survey participants said a “patient,” 25% a “customer,” and 4% a “client.”
PROSTHETISTS TEND TO “GET OFF TO A GOOD START” WITH PATIENTS
The survey participants responded very favorably to three questions regarding their first meeting with a prosthetist: 84% “felt comfortable meeting them”; 92% “felt comfortable asking them questions”; and 73% “felt the responses to their questions were beneficial.” They also responded favorably (70%+) to nine questions regarding the character of the first prosthetists they had met with.
ENCOUNTERS WITH THEIR FIRST PROSTHETIST COULD BE BETTER
Encounters include activities such as prosthetic fitting, adjustments and repairs, and follow-up visits, which all occur after the initial meeting or evaluation. Just less than half (47%) of the survey participants rated their “overall experience with their first prosthetist” as being “favorable.” The remaining 53% of the responses were either “neutral” (20%) or “unsatisfactory” (33%). Although other survey questions seemed to indicate higher approval ratings of their first prosthetist, such as questions that addressed specific issues such as character, the author's opinion is that this particular “overall rating” was lower as it included more extensive patient-prosthetist interactions than just an initial meeting. Under the more broad-based category of “overall experience,” the patient had more clinical exposure to their first prosthetist to base their opinion on beyond just the first meeting, causing their opinion to change, that is, comfort, fit, and function of the prosthesis over time seemed to outweigh good initial character. Although only 6 of the 50 respondents were bilateral amputees, the comparison between the percentage of “favorable” ratings between unilateral and bilateral amputees was very similar, 46.5% and 50%, respectively. Also, the percentage of “unsatisfactory” ratings was higher for unilateral amputees versus bilaterals, 34.9% to 16.7%, respectively. The results of this survey did not support the hypothesis that bilateral amputees would be less satisfied with their prosthetists because of the compounded difficulty of their situation. This result could be due to the low percentage of bilateral amputees who participated in this survey (only 12%).
PROSTHESIS USERS CHANGE PROSTHETISTS FREQUENTLY
The average number of prosthetic facilities at which the 50 survey participants sought treatment was close to three (2.71). Based on the approximate average of 8 years that the participants of the survey had been wearing prostheses, this equates to the prosthesis user changing prosthetic providers approximately every 3 years (2.95). This figure varied from a low of 1.5 prosthetists seen by users with 1 year of prosthesis-wearing experience to a high of greater than 4.6 prosthetists seen by users with greater than 25 years of prosthesis-wearing experience. (Note: for calculation purposes, for those individuals indicating that they had been treated by “>4” prosthetists, I entered the number “5” into the spreadsheet. Fourteen percent of the survey participants fell into this category.) The 1989 survey of amputees stated that 9 of its 21 participants had seen two or more prosthetists during the period of time they had been amputees; most had been amputees less than 5 years, suggesting a fairly high turnover rate.2
Why amputees see multiple prosthetists: The survey participants' “reason for seeing multiple prosthetists” focused mainly on two factors that combined for 62% of the survey participants: 44% were “not happy with prosthetic fit,” whereas 18% were “not happy with the service” they received from their prosthetist. The 1989 survey cited two respondents (of 21) who changed prosthetists after perceiving that patient-initiated suggestions about their prostheses were largely ignored.2
MANY PROSTHETIC PATIENTS WOULD NOT RECOMMEND ALL OF THE PROSTHETISTS THAT HAD TREATED THEM
The number of years of experience these survey participants had wearing prostheses varied from less than 1 year to greater than 25 years, averaging approximately 8 years. During these years, as evidenced by one of the survey's questions, many of those surveyed became dissatisfied with a significant percentage of the prosthetists who had treated them. Only 25% of the 50 survey participants said they would recommend 100% of the prosthetists who had treated them, whereas 46% would recommend 1 of 2, and the remaining 28% would recommend only 1 of 4. Ultimately, approximately three quarters of the survey participants (74%) would recommend only one quarter to one half of the prosthetists who had treated them.
AMPUTEES' “BIGGEST CONCERNS” WITH A NEW PROSTHESIS
Prosthesis “function” was rated highest at 45%, with “comfort and fit” at 39%. “Cosmesis” and “Cost” were not important factors, totaling 8% and 6%, respectively.
Based on a review of the results of this 50-person survey, a number of conclusions may be drawn. The results of this 2008 to 2009 survey were partially validated by several questions that were similarly worded and responded to by survey participants in a 1991 national amputee survey1 (see Table 1).
Surveys of individuals wearing lower limb prostheses should be repeated in different geographic regions of the United States to either validate or contest the findings of this particular survey, with similar questions being used, so that valid comparisons of results can be made. One or more of the national prosthetic organizations could develop a single questionnaire to be used nationally, so that results could be easily compared from region to region.
The general healthcare community needs to implement a system that more effectively meets the information needs of amputees, who are a growing segment of our population. This information should be readily available (e.g., brochures in offices and hospitals) and should aim to help to eliminate the mystery (both physical and psychological) surrounding the amputation, recovery, prosthesis fitting, and rehabilitation processes. Availability of such educational information could serve to reduce patient anxiety levels while enabling new amputees to make more informed decisions about their futures.
Individuals who are scheduled to have lower limb amputations should also be informed that they have a choice when it comes to receiving prosthetic care. This information needs to come from physicians, hospital staff, physical and/or occupational therapists, case managers, or the surgeons performing the amputations.
If circumstances permit, candidates for amputation should be encouraged to contact one or more prosthetists before having their surgery. During these discussions, they should ask about how the level of amputation affects the componentry options, and the difficulty of use, of a prosthesis.
All professionals working with amputees (hospitals, surgeons, physical and occupational therapists, case workers, social workers, psychologists, prosthetists, etc.) on both a preamputation and postamputation basis should direct them to the many resources that are available, such as the Amputee Coalition of America, peer counselors, support groups, the Internet, etc.
Owners of prosthetic facilities should consider surveying a sampling of their current and past patients to determine the level of satisfaction with patients' interactions with the prosthetists and with their prosthetic comfort, fit and function. These surveys should not require the patient's name to encourage the respondents to be more candid about their opinions and experiences.
Prosthetists should spend more time with patients educating, counseling, and helping them to set reasonable personal expectations during encounters before and during prosthetic fittings. Information in printed form should also be provided to amputees whenever possible to supplement oral presentations when at the prosthetist's office.
Detailed results of the individual survey questions are listed below in subject matter groupings. The survey questions are shown in italics.
DEMOGRAPHICS OF SURVEY PARTICIPANTS
Fifty wearers of prostheses were surveyed during a 7-month period between August 2008 and February 2009.
- Forty-one were conducted orally, face-to-face.
- Nine were completed independently and returned by mail.
Participants' age at time of survey: see Figure 1.
Participants' age at most recent amputation: see Figure 2.
Reason for the amputation (note: peripheral vascular disease, peripheral arterial disease, and infections were in many cases linked with diabetes but not shown with diabetes being the reason for the amputation): see Figure 3.
The number of years participants have been wearing a prosthesis: see Figure 4.
Had you ever met or known an amputee prior to your amputation surgery? Yes—52%.
If answered “yes” to question above, was this acquaintance beneficial to you after becoming an amputee? Yes—26%.
Why was it beneficial?
- Inspirational, gave me hope, gave me courage.
- Learned from their mistakes.
- Keep an open mind.
- Don't embrace “the invalid thing.”
- Learned how a prosthesis worked.
- Learned by example.
Prior to your amputation, do you feel you were physically and mentally prepared to get around wearing a prosthesis?
FIRST PROSTHETIST QUESTIONS
When was your first meeting with a prosthetist? Fifty-two percent were 3 or more weeks after amputation surgery (Figure 5).
Had you met or talked with multiple prosthetists before choosing one to work with? No—82%.
How did you locate your first prosthetist? Seventy-three percent were referred by a medical professional or insurance provider (see Figure 6).
What did you feel like when you first met with a prosthetist? See Figure 7.
Did you consider your first prosthetist to be:
- Competent: yes—78%.
- Courteous: yes—90%.
- Professional: yes—82%.
- Patient: yes—74%.
- Compassionate: yes—74%.
- Helpful: yes—70%.
- Knowledgeable: yes—76%.
- Supportive: yes—72%.
- Thorough: yes—76%.
Did you feel comfortable meeting with your first prosthetist? Yes—84%.
Did you feel comfortable asking your first prosthetist questions? Yes—92%.
Did you feel that the responses to your questions were beneficial? Yes—73%.
What were your sources of information about prosthetics?
- Prior to your amputation? None—59% (see Figure 8).
- Following your amputation? My prosthetist—67% (see Figure 9).
What was your biggest concern when being fitted with your first prosthesis? See Figure 10.
Were the following topics discussed with you prior to your amputation?
- How much time it would take to recover? Yes—43%.
- How long it would be before you would be fitted with your first prosthesis? Yes—50%.
- What reasonable mobility expectations should be? Yes—48%.
- How much work is involved in using a prosthesis? Yes—27%.
Were the following topics discussed with you during your first meeting with a prosthetist?
- Your medical history? Yes—63%.
- Your preamputation mobility level? Yes—47%.
- Your desired postamputation level of mobility? Yes—71%.
- Your interests in athletics or recreational activities? Yes—59%.
Were your general questions addressed? Yes—71%.
Were the following topics discussed with you prior to receiving your first prosthesis?
How your recovery process would progress? Yes—51%.
The changes you should expect to see in your residual limb? Yes—61%.
The need for wearing a shrinker? Yes—78%.
How the prescription for your prosthesis was generated? Yes—36%.
How the fitting process would progress? Yes—57%.
How the componentry for your prosthesis was selected and why? Yes—34%.
The difference between a test and a definitive prosthesis? Yes—60%.
The importance of getting physical therapy, maintaining a good diet and exercise program? Yes—57%.
The fact that your energy expenditures will increase when ambulating with a prosthesis? Yes—40%.
The importance of establishing as normal a gait as possible? Yes—43%.
The importance of setting reasonable expectations? Yes—33%.
The availability of support resources? Yes—30%.
During the prosthetic fitting process, were the following topics discussed?
The importance of physical hygiene with residual limb? Yes—67%.
The importance of being physically active with new prosthesis? Yes—65%.
Your need to seek medical help if you experience issues with your residual limb—sores, blisters, open wounds, etc.? Yes—75%.
Your need to contact your prosthetist if you experience problems with your prosthesis—breakage, something loose, noises while walking, etc.? Yes—76%.
The need to manage sock plies when your limb volume fluctuates? Yes—63%.
The need to contact your prosthetist if you find you are wearing numerous sock plies and your socket does not fit intimately? Yes—65%.
How to properly don and doff your prosthesis? Yes—84%.
How long you should expect your final/definitive prosthesis to last? Yes—31%.
How would you rate your first encounter with a prosthetist?
How many prosthetic facilities have you been to since becoming an amputee?
The number of prosthetic facilities was 2.71 over an average of an 8-year time frame per survey participant (see Figure 11).
Calculated ratio between the number of years the survey participant had been wearing a prosthesis versus the number of prosthetic companies they had been treated by averaged 2.71 (using the value “5” for the >4 prosthetist category). See Figure 12.
Why did you see multiple prosthetists? Sixty-two percent were not happy with either fit or service level. Note: “N/A” accounts for respondents who had not seen more than one prosthetist (see Figure 13).
What are the percentages of prosthetists seen that survey participants would recommend to other amputees? Only 37% of survey participants would recommend more than 50% of their prosthetists (see Figure 14).
Advice to prosthetists?
- Treat patients like human beings, be patient and understanding.
- Listen to patient's concerns and feedback.
- Explain patient's options regarding componentry.
- Be accessible to patients between visits.
- Explain process and what's going to be done.
- Seek out assistance if needed.
- Provide physical therapy services.
Do you think that you have met your mobility expectations while wearing your prosthesis?
- Came up short of expectations—38%
- Met expectations—21%
- Exceeded expectations—40%
Did your mobility expectations change over time?
- They increased—45%
- They decreased—29%
- No change—27%
If your expectations were met, did it take longer than expected? Yes—12%.
If your expectations changed, how did they change?
My expectations decreased:
- Due to pain from surgery.
- As a bilateral, it was hard to coordinate both legs.
- Originally thought I'd be able to do everything, but I could not dance, play tennis, garden.
- Patient set sights too high.
- High-activity person expected to be able to continue at normal activity levels, but wasn't able to.
- Was not able to run due to componentry and discomfort.
- Stopped going out as much since things have to be planned out ahead and more time allowed.
My expectations increased:
- Once my prosthesis was incorporated into my body image (∼age 13 years).
- Progressed from walking to playing basketball, playing golf, and riding bikes.
- Was eventually able to go up and down stairs.
- With gain in confidence, drove car and gardened.
- At first, I was just happy to be alive and things improved from there.
- At first, things were harder to do, but I did them and got over it.
- Learned over time that I could do everything.
- Eventually rode a motorcycle.
- Walked better following my amputation.
- Learned that life continued after amputation, and I successfully dealt with psychological issues.
If your expectations were not met, why do you think that was? The “N/A” respondents indicated that they had met their expectations. See Figure 15.
Current prosthesis use:
Do you wear your prosthesis every day? Yes—88%.
How many days a week do you wear your prosthesis? See Figure 16.
How many hours a day do you wear your prosthesis? See Figure 17.
What was the biggest challenge you had to overcome as a new amputee?
- Find a competent prosthetist.
- Being accepted as physically normal.
- The loss of independence.
- Dealing with the psychological challenges.
- Dealing with people trying to do everything for me.
- Getting dressed.
- Dealing with phantom pain.
- Continuing everyday life.
- Not being able to return to old job.
- Riding a motorcycle or driving a car.
- Learning that life was not over.
How could your prosthesis be improved?
- Make it lighter.
- Make the feet look more feminine.
- Make ankle and foot move more naturally.
- Deal with limb shrinkage without having to add socks.
What advice would you share with someone about to have a lower limb amputation?
- Join Amputee Coalition of America.
- Understand that there is life after an amputation.
- Rely on your faith, be positive, go about your life.
- Get advice/guidance from other amputees.
- Be strong and active.
- Contact a prosthetist early in the process.
- Join a support group.
- Don't feel sorry for yourself, accept it and move ahead.
- Your life will be different, but it does not have to be worse.
- Keep your knees if at all possible.
- Do your research before choosing a prosthetist.
- Be truthful about the recovery and rehabilitation process.
Compared to other medical professionals, how would rank your prosthetist in terms of professionalism?
- Equal to—44%
- Better than—40%
- Worse than—16%
What advice would you give to prosthetists so that they could better serve their patients?
- Provide patient with education materials or references.
- Treat each patient individually.
- Be a good listener.
- Maintain a positive attitude with patient.
- Explain what you are going to do and why.
- Remember, it's all about the patient, not the prosthetist.
- Review options that are available with your patients.
- Manage patient's time better while in the office. Help patients set reasonable goals and expectations.