With the incidence of diabetes and peripheral vascular disease on the rise, and the correlation of those conditions with three-quarters of amputations in the United States, researchers anticipate that by 2050, amputations could occur in approximately 3.6 million individuals in the U.S. with diabetes and/or peripheral arterial disease (PAD).1
Despite the advances made in systemic and multidisciplinary collaboration to maximize amputation outcomes, the emphasis on and recognition of overall quality of life predictors, specifically the social network for amputees, often lags in comparison. Although earlier studies did not find a connection between functional outcomes with amputation and social support, more current studies are finding the role of social networks to have a vital role in long-term morbidity.1-5
It is a well established standard of care to evaluate the parameters necessary for healing when planning a lower extremity amputation. Whether the amputation is a minor amputation such as a digital amputation or a major amputation such as a below-knee amputation, we must take infection, vascular status and metabolic state into account in an effort to optimize both the patient’s healing and outcome of the anticipated procedure. Although many believe an amputation is an end-stage treatment, far too often, we neglect some of the patient-centered parameters that will ultimately affect not only the outcome but the patient’s sense of well-being and ultimately quality of life in dealing with the amputation.
A Closer Look At The Impact Of Social Support Networks On Quality Of Life
The impact of amputation is undeniably great. It is not confined only to the loss of a limb but can also involve a decline in an individual’s quality of life. The strength and depth of patients’ social and support networks, the patient-centered parameters, are well known to have an effect on the overall patient outcome, especially when dealing with an amputation.1 However, one must understand that the social network extends beyond family members and friends as it may also reach into the organized network of the medical system and all its facilities.
Hawkins and colleagues describe two components of the social support network that are important in maximizing patient outcomes with amputation: social integration and systemic social support.1 The group verified the benefits of each component of support individually and collectively. In the study of 63 patients, the authors found a high incidence of functional ambulation in patients with high social integration with the largest percentage being “fast walkers” when taking the six-minute walking test. Approximately one-half of the patients in the low social integration group were “non-walkers” in comparison. Ultimately, an increase in social integration or social networks resulted in a higher quality of life for these patients. Surprisingly, when researchers compared systemic factors such as societal and governmental support between two populations, one with high support and a population with low support, there was no statistical difference in the outcomes between the two in regard to functional status.
Roepke and colleagues further define participation into two categories, objective participation and subjective participation, both of which impact patient quality of life when dealing with an amputation.2 At times, it is not enough to take into account only the individual’s actual activity level as an assessment of his or her amputation’s success. It also becomes crucial to consider the personal satisfaction of the amputee with a sustained or new level of activity, and any of its potential limitations. To bring quality of life into another perspective, patients with an amputation may have a decline in overall functional activity but they may still find themselves functional at a social level, ultimately keeping or improving their quality of life post-amputation. Roepke and colleagues emphasize the need to evaluate the subjective findings, those personal feelings or findings reported by the patient with an amputation, and ultimately define the importance of these findings in overall outcomes.2
Suckow and colleagues noted a recurrent item in that quality of life indicators per patient report were dictated by mobility, pain, and progressive disease processes such as peripheral vascular disease and depression.7 Interestingly, in this patient population in which chronic limb ischemia was the indication for the amputation, one-fourth of the patients would have opted to have an amputation earlier in the course of their treatment. This finding further underscores the importance of having an overall peri-amputation assessment process to determine patient functional capability, overall acceptance of the disease process and clearly define long-term expectations of his or her planned surgery/amputation.
How Social Support In A Health Care Setting Can Help Amputation Patients
It is our experience that incorporating an all-inclusive system, one with both systemic and social support, and objective as well as subjective measurements, will maximize amputation outcomes and overall quality of life for amputees.
Drawing from past experiences at the University of Texas at San Antonio (UTHSC-SA) and with the Veterans Administration Puget Sound Health Care System, we have personally witnessed the gains patients make when a we incorporate social outreach within an institutional setting. While at UTHSC-SA, the faculty not only saw the importance of social support for amputees but responded by developing an amputation support group. University faculty moderated this group but the amputees further facilitated it. The role of the amputees in both a social yet institutionalized group gave them an outlet to reach out to other amputees, discuss fears and struggles, and celebrate successes as they faced life with an amputation. Subjectively, quality of life improved for those who were involved.
Also, while working as Director of the VA Preservation Amputation for Veterans Everywhere (PAVE) program, the first author employed a similar concept by facilitating a coordinated multidisciplinary team, which met weekly and reviewed all pending and past amputees. This helped ensure appropriate amputation level planning and post-procedure progress. The group also worked to provide an “amputee mentor” to patients who were pending amputation or who were immediately post-amputation. These mentors would, upon the consent of the patient, visit with him or her and discuss life with an amputation, allowing the patient to ask questions and help him or her to gain a better understanding of the challenges ahead. These programs served two purposes. First, they provided guidance from personal experience for the patient receiving the amputation. The second benefit was the development of a social network that blossomed from the relationships patients developed with each other within the system.
As Hawkins and his group noted, systemic factors did not weigh into the final outcomes in regard to amputation success, function and satisfaction.1 As further reported by Roepke and colleagues, social support was one of three key factors for success along with amputation level and mental status for overall satisfaction. However, it was social support that predicted actual satisfaction with the patients’ new level of participation post-amputation.2
It would then seem prudent that institutions provide outreach programs or venues in which social networking within a controlled system extends beyond just the rehabilitation team. We propose that beyond the “interprofessional rehabilitation team,” institutions should implement a more multidisciplinary approach in coordinating such an outreach venue for patients.2 Given the role that mental status, amputation level and social engagement play in successful outcomes, this approach would seem more all-encompassing.
Critical players on the team would include surgical specialties such as podiatry, orthopedics and vascular surgery; mental health specialists; physical medicine and rehabilitation specialists; prosthetists; and primary care specialists. This combination would ultimately provide high level, peri-amputation coordination of care. With these specialists on board working as a cohesive team, one can assess functional capacity pre-amputation given the expected level of amputation when possible, surgical optimization in regard to vascular status, stabilization of systemic illness such as diabetes, the amputation procedure as well as appropriate prosthesis measurement and prosthesis staging.
To further complement the team, a group of post-amputation patients can coordinate to assist as mentors for patients pre- or post-amputation with staff guidance. We cannot overstate the importance of this role. Further reinforcing this role’s importance is that almost 90 percent of the patients surveyed in one study found peer support was one factor they believed would have further improved their care and outcomes.7 Additionally, 70 percent of those surveyed suggested more extensive rehabilitation and prosthetic involvement would have further complemented their amputation experience.
Incorporating these components would further provide an extension that would lead to a level of social support that could extend both beyond and within the system itself for some, especially in an era where patient-centered outcomes as opposed to surgical outcomes alone are becoming more mainstream.6 This could also ultimately increase the role and importance of systemic involvement in amputation outcomes as a contributing measure along with social factors and further propel the institutional component of care into the forefront of a comprehensive care approach.
Therefore, it is our opinion that providing a social extension within a controlled system can also provide long-term benefits to amputee patients and have a further outreach ideally improving patients’ overall quality of life.
Dr. Hadi is currently a full-time faculty member at the Louis Stokes Veterans Administration Medical Center in Cleveland and at the Akron Community-Based Outpatient Clinic. She served as a Past PAVE Program Director at the Veterans Administration in Puget Sound, Wash.
Dr. Alayon is currently a full-time faculty member with the Louis Stokes Cleveland Veterans Administration Medical Center in Cleveland and at the Youngstown Community Based Clinic. He previously served as a Podiatric Residency Director with the Veterans Administration Puget Sound Health Care System in Puget Sound, Wash.
1. Hawkins AT, Pallangyo AJ, Herman AM, et al. The effect of social integration on outcomes after major lower extremity amputation. J Vasc Surg. 2016; 63(1):154–62.
2. Roepke AM, Williams RM, Turner AP, et al. A longitudinal study of social participation after dysvascular lower extremity amputation. Am J Phys Med Rehabil. 2017; 96(10):741–7.
3. Nissen SJ, Newman WP. Factors influencing reintegration to normal living after amputation. Arch Phys Med Rehab. 1992; 73(6):548-51.
4. Schoppen T, Boonstra A, Groothoff JW, et al. Physical, mental and social predictors of functional outcome in unilateral lower-limb amputees. Arch Phys Med Rehab. 2003; 84(6):803-11.
5. Williams RM, Ehde DM, Smith DG, et al. A two-year longitudinal study of social support following amputation. Disabil Rehabil. 2004;26(14–15):862-74.
6. Hawkins AT, Henry AJ, Crandell DM, Nguyen LL. A systemic review of functional and quality of life assessment after major lower extremity amputation. Ann Vasc Surg. 2014; 28(3):763–80.
7. Suckow BD, Goodney PP, Nolan BW, et al. Domains that determine quality of life in vascular amputees. Ann Vasc Surg. 2015; 29(4):722-30.