Amputation Following Diabetic Foot Disease: To Be Feared or Welcomed?

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By Phil Stevens, MEd, CPO, FAAOP

As a part of the human experience, the concept of fear has been explored across the ages. Among the fathers of philosophy, Plato concluded that "courage is knowing what not to fear," while Aristotle opined that "he who has overcome his fears will truly be free."

A recent study concluded, alarmingly, that patients with diabetic foot disease fear major lower-limb amputation more than death.1 This finding is made more striking by the concurrent findings that for many of those who undergo transtibial amputations due to diabetic foot disease, quality of life actually improves following the procedure.2-3 This article reviews the findings of these recent publications and considers the implications on patient education and well-being. Assuming the fathers of philosophy were correct, clinicians should feel empowered to provide their patients with a new measure of courage and freedom.

Prevalence of Fear

For many patients with diabetes, especially those contending with diabetic foot disease, the fear of lower-limb amputation can be substantial. This was brought to light in a 2017 publication about 416 patients with type 1 or type 2 diabetes.1 Specifically, subjects were asked to rank their most feared complications associated with diabetes. In addition to lower-limb amputation, other complications included blindness, diabetic foot infection, end stage renal disease, and death.1

The demographics of the studied patients were what might be expected, an average age of 60.2 years, predominantly type 2 diabetes (89 percent), comorbid peripheral neuropathy (76 percent), insulin use (64 percent), a median duration of diabetes of ten years and a median body mass index of 32.5kg/m2.1

Among the 207 patients in the experimental group were individuals with diabetic foot ulceration, Charcot neuropathy, foot infection, and neuropathic fractures or dislocations. These were compared against the responses of 254 peers with diabetes but no diabetes-related foot concerns or pathologies. The five comorbid health concerns identified above were ranked with the most feared assigned a score of 1 and the least feared assigned a score of 5.

For those without diabetic foot disease, blindness (35.4 percent) and death (33.9 percent) were the most frequently reported as the most feared complication associated with diabetes.1 Among this group, fear of amputation came in a distant third, identified by only 17 percent of the population as their most feared complication.1

However, among those with some form of diabetic foot disease, different trends emerged. The fear of blindness remained predominant, reported by some 34 percent as their greatest fear. This was closely followed by a fear of lower-limb amputation (32 percent), with the fear of death reported as the most feared complication by only 21 percent of respondents. In terms of an odd's ratio, individuals with diabetic foot disease were 1.8 times more likely to rank lower-limb amputation as their greatest fear when compared to death.1 Viewed another way, patients with diabetic foot disease were 2.36 times more likely to rank major lower-limb amputation as their greatest fear than their peers without any form of diabetic foot disease.1

Other demographic variables were significantly associated with an individual's decision to rank amputation as their most feared complication. Most prominent among these was insulin use, observed among 98 percent of the 108 people reporting amputation as their primary fear, but only among 54 percent of the 353 subjects reporting one of the other four diabetes complications as predmonant.1 In terms of odds ratios, those patients requiring insulin were 46 times more likely to report amputation as their primary fear compared to their peers who did not require insulin.1 Also noteworthy was the influence of a history of diabetes exceeding ten years, reported by 67 percent of those reporting amputation as their primary fear, and only by 25 percent of those who identified an alternate predominant fear.1 Similarly, neuropathy was reported among 99 percent of those identifying amputation as their greatest fear, but only by 68 percent of those fearing an alternate comorbid complication.1 

Should Amputation be Feared?

Given the apparent prevalence of fear of amputation among this population, it is entirely appropriate to better understand whether such fears are fully justified. Pilot data addressing this question was initially published in 2013.2 In this effort, self-reported outcome measures were collected pre- and post-operatively from 13 patients with diabetes who underwent transtibial amputations. Specifically, patients completed the familiar Medical Outcome Study Short Form 36-item health survey (SF-36) as well as the lesser known Foot and Ankle Ability Measure (FAAM) (See sidebar).2

The subjects in question were an average of 51 years old at the time of amputation, with nine of the 13 requiring insulin. All patients had non-reconstructable Charcot neuropathy and osteomyelitis and completed the outcomes in question both prior to and at least one year after their transtibial amputations.2

With regard to the more familiar SF-36, physical function scores increased 158 percent following transtibial amputation, from 24 to 62 on the 100-point scale. A non-significant increase of 8 percent was reported on the mental health scale, with the mean pre-amputation score increasing from 67 to 73.3

Significant improvements were also observed on the FAAM with the activities of daily living (ADL) subscale increasing 114 percent and the sports score increasing 183 percent.2 Perhaps the most revealing statistic is found in the observation that 12 of the 13 subjects were satisfied with the amputation and had no reservations.2

The lead author on the preceding paper subsequently published a longer case series several years later.3 Using the same outcome measures, these authors reported upon 41 subjects with diabetes who had undergone transtibial amputations and completed the outcome measures prior to and at least one year after amputation.3 Similar to the pilot data, the average subject age was reported at 53 years old, with 85 percent requiring insulin use.

Once more, the average physical function score of the SF-36 increased significantly following amputation, from 15 to 45 on the 100-point scale. As with the pilot observations, mental health scores were reasonably high prior to amputation, reported at 60, with a smaller but still significant increase post-amputation to 76.3

Similarly, the ADL score on the FAAM increased significantly from 36 to 58, with the very low average sports score of only 3 increasing to 28.3 

The Population in Question

The data described above should be understood within the broader context of the state of the individuals at the time of amputation. Only 63 percent of the subjects were ambulatory prior to their amputations, a number that increased to 83 percent in the year following amputation.3 As might be expected, those patients who were unable to ambulate post-operatively tended to have lower outcome scores before and after their amputations, with smaller improvements noted in this group.3 Improvement in the SF-36 physical function score occurred in 82 percent of those patients who were ultimately able to ambulate with a prosthesis, but only in 43 percent of the seven patients who failed to ambulate after amputation. Similar trends were seen with the FAAM.

Thus, the improvements in quality of life and physical function were much more likely to be realized among those patients who underwent amputations at a residual health state that allowed them to regain ambulation with a prosthesis.3 As summarized by the author, "In select patients with nonfunctional lower extremities resulting from instability and/or chronic infection, transtibial amputation can result in significant improvement in quality of life and lower extremity function. We acknowledge that 25 percent of patients had a reduction in self-reported quality of life; however, 75 percent of patients improved their quality of life."3 

Additional Insights

Additional insights about the impact of amputation on the quality of life for individuals with vascular disease can be found in the published observations of a series of focus groups conducted with 26 individuals who had critical limb ischemia. The most frequently identified determinant of their quality of life was mobility (65 percent), followed closely by pain (60 percent), and progression of the disease in the remaining limb (55 percent).4

In exploring the construct of mobility, only 68 percent of the interviewed patients stated that they possessed and tried to use a prosthesis when able, but 83 percent acknowledged that they reverted to using a wheelchair at least half the time. Notably, the focus group participants unanimously agreed that a prosthesis improves (or would improve) their quality of life.4

Notably, roughly one quarter of the participants would have preferred an amputation earlier in their course of care, and just over half stated that their care could have been improved by earlier mention of amputation as a possible outcome.4 These sentiments were captured in participant statement such as "I wish they had done the amputation three operations sooner," and "Just get on with it. Let me heal and get back to life."4

This disposition toward favoring an earlier amputation was echoed in a more recently published set of focus group findings from individuals who underwent major lower-limb amputations due to arterial disease.5 Specifically, these authors reported that among the five participants in their focus group, all wanted to have an active role in surgical decision-making, and two stated that in retrospect they wished they had elected to undergo amputation earlier in their clinical care.5

Consistent with sentiments observed in other publications, the 20 subjects that participated in phase one of the focus group surveys defined recovery as regaining independence, a construct that varied between respondents from independent ambulation outside of the home to "standing up with your hands in your pockets."5 Regardless of the specific definition, the most common event associated with a successful recovery was obtaining a prosthesis and subsequent ambulation.5 

Conclusion

The fear of amputation among those with diabetes and vascular disease can be substantial, with patients with diabetic foot disease being more likely to report their greatest fear as a fear of amputation than a fear of death. Ironically, for many of these patients the surgical procedure they feared appears to ultimately increase quality of life, particularly with respect to physical function. This appears to be especially true for those individuals with enough residual health to permit a return to prosthetic ambulation.

Mobility appears to be a primary determinant in the quality of life reported by individuals with vascular amputations, with many amputees regretting what they felt were excessive delays in undergoing their amputations. Should such delays ultimately undermine an individual's potential to obtain prosthetic ambulation, this fear of amputation could restrict the benefits in quality of life that would otherwise accompany the procedure.

Returning to the fathers of philosophy, recognizing the improved quality of life that often accompanies an amputation that restores physical mobility would add a measure of courage to those individuals facing this difficult course of care. By overcoming these fears through additional knowledge, patients are free to make a more informed decision that, in many cases, may ultimately improve their quality of life. 

Phil Stevens, MEd, CPO, FAAOP, is a director with Hanger Clinic's Department of Clinical and Scientific Affairs. He can be contacted at philmstevens@hotmail.com.

References

1.  Wukich, D. K., K. Raspovic, and N. C. Suder. 2017. Patients with diabetic foot disease fear major lower-extremity amputation more than death. Foot Ankle Specialist 11(1):17-21.

2.  Wukich, D. K., and K. T. Person. 2013.Self-reported outcomes of transtibial amputations for non-reconstructable Charcot neuropathy in patients with diabetes: a preliminary report. Diabetic Medicine 30:e87-90.

3.  Wukich D. K., J. Ahn, K. M. Raspovic, J. La Fontaine, L. A. Lavery. 2017. Improved quality of life after transtibial amputation in patients with diabetes-related foot complications. The International Journal of Lower Extremity Wounds 16:114-121.

4.  Suckow, B. D., et al. 2015. Domains that determine quality of life in vascular amputees. Annals of Vascular Surgery 29(4):722-30.

5.  Columbo, J. A., et al. 2018. Patient experience of recover after major leg amputation for arterial disease. Vascular and Endovascular Surgery 52(4):262-8.