National Limb Loss Resource Center

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The Administration for Community Living (ACL) was established in April 2012 to serve older adults and people with disabilities across their lifespan as they fully engage and participate in their communities, make informed decisions, and exercise self-determination and control about their independence, well-being, and health. ACL’s mission is to enable people with disabilities across their lifespans to live in the community through the availability of, and access to, high-quality long-term services and supports, including supports for families and caregivers. An estimated 2 million persons live with limb loss/difference in the United States[1]. Each year an estimated 185,000 amputations are performed in the United States[2]. PWLL experience many barriers to successful community reintegration and full participation in social life. PWLL perceive a reduction in their participation in recreational activities, satisfaction at work and feel more impaired in their ability to navigate their community following the amputation of their limb[3]. Additionally, PWLL often experience anxiety and psychological distress[4], low rates of workforce re-entry[5], environmental barriers[6], and secondary co-morbidities associated with the amputation of a limb (e.g. back pain, arthritis)[7]. Furthermore, individuals with limb loss report receiving little information about their rehabilitation from their healthcare provider either before or after their amputation[8]. Finding and accessing the right long-term services and supports can be a daunting task for individuals living with limb loss and their families. Individuals trying to access information on limb loss frequently find themselves confronted with a bewildering maze of organizations and scientific jargon at a time when they are the most vulnerable or in crisis. This often results in individuals and families making decisions based on incomplete, and sometimes inaccurate, information about their options. The lack of current high quality information makes it difficult for individuals to make informed decisions about both their present and their future well-being, which may result in frustration, inappropriate care or equipment, negative health impacts and increased costs. This situation becomes worse as the number of people living with limb loss increases. Through this funding opportunity announcement, ACL plans to award one (1) Cooperative Agreement for a National Limb Loss Resource Center to ensure the availability of, and access to, the most comprehensive, high quality information and supports for people of all ages living with limb loss, their families and caregivers. As the number of individuals that experience limb loss increases and the cost of healthcare rises, it is important to ensure that individuals affected have access to the most current, relevant information so that they can make informed choices regarding their physical and emotional health, and overall quality of life. [1] Ziegler-Graham K, MacKenzie EJ, Ephraim PL, Travison TG, Brookmeyer R. Estimating the prevalence of limb loss in the United States: 2005 to 2050. Arch Phys Med Rehabil2008 Mar;89(3):422-9. [2] Adams P, GE H, Marano M. Current Estimates from the National Health Interview Survey, 1996. Vital Health Stat1999;200(10). [3] Ziegler-Graham K, MacKenzie EJ, Ephraim PL, Travison TG, Brookmeyer R. Estimating the prevalence of limb loss in the United States: 2005 to 2050. Arch Phys Med Rehabil2008 Mar;89(3):422-9. [4] Mckechnie PS JA. Anxiety and depression following traumatic limb amputation: A systematic review. Injury2014. Darnall BD, Ephraim P, Wegener ST, Dillingham T, Pezzin L, Rossbach P, MacKenzie EJ. Depressive symptoms and mental health service utilization among persons with limb loss:results of a national survey. Arch Phys Med Rehabil2005 Apr;86(4):650-8. Horgan O, MacLachlan M. Psychosocial adjustment to lower-limb amputation: A review. Disability & Rehabilitation2004;26(14-15):837-50. [5] Hebert JS, Ashworth NL. Predictors of return to work following traumatic work-related lower extremity amputation. Disability & Rehabilitation2006;28(10):613-8. Fisher K, Hanspal RS, Marks L. Return to work after lower limb amputation. International Journal of Rehabilitation Research2003;26(1):51-6. [6] Ziegler-Graham K, MacKenzie EJ, Ephraim PL, Travison TG, Brookmeyer R. Estimating the prevalence of limb loss in the United States: 2005 to 2050. Arch Phys Med Rehabil2008 Mar;89(3):422-9. [7] Gailey R, Allen K, Castles J, Kucharik J, Roeder M. Review of secondary physical conditions associated with lower-limb amputation and long-term prosthesis use. J Rehabil ResDev2008;45(1):15-29. [8] Pedlow H, Cormier A, Provost M, Bailey S, Balboul G, Coucill A, Coleman J, Fox P, Moloney T, Nixon SA. Patient perspectives on information needs for amputation secondary to vascular surgery: What, when, why, and how much? J Vasc Nurs2014 Sep;32(3):88-98. Ziegler-Graham K, MacKenzie EJ, Ephraim PL, Travison TG, Brookmeyer R. Estimating the prevalence of limb loss in the United States: 2005 to 2050. Arch Phys Med Rehabil2008 Mar;89(3):422-9.

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