Amputee Coalition Working to Enhance Partnership With the Centers for Disease Control (CDC)

By: Kendra Calhoun, President & CEO

Since 1997, the Amputee Coalition of America (ACA) has had a cooperative agreement with the Centers for Disease Control and Prevention (CDC) to de­velop and manage the National Limb Loss Information Center (NLLIC). The many programs and publications supported by the NLLIC, as well as the partnerships entered into by the Amputee Coalition, are all designed to help people who have lost a limb or who were born with a limb difference lead an active lifestyle as productive members of society. To pursue its mission, the NLLIC partners and collaborates with many organizations in addition to the CDC, including Johns Hopkins University Bloomberg School of Public Health, the University of Washington, the United States Department of Veterans Affairs, the Department of Defense, the Transportation Security Administra­tion, and the Commission on Accreditation of Rehabilitation Facilities.

The National Limb Loss Information Center (NLLIC) provides personalized, timely, comprehensive and accessible resources and information for people affected by limb loss throughout their lives through a national call-in center and our website. The NLLIC call center averaged more than 400 requests for information each month during 2008. The Amputee Coalition's Web site hosted more than 400,000 unique visitors last year, and inMotion magazine, the flagship publication of the Amputee Coalition and the NLLIC, has a readership of more than 180,000 each issue. The NLLIC works with parents whose children were born with a limb difference or have lost a limb, youths who are living with limb loss, adults who have lost a limb to trauma or disease, active military personnel and veterans, healthcare professionals and caregivers.

The ACA's partnership with the CDC also helps us to organize many other valuable programs:

• The Amputee Coalition Youth Camp provides a 5-day traditional summer camp experience for children ages 10-17 who have lost arms and/or legs or who were born with limb differences. Over the years, more than 450 campers have attended and benefited from the camp. Each year, more than 50 percent of those who attend state that they feel better about themselves because of attending the camp.

• The Amputee Coalition's Peer Visitor Program trains people with limb loss to provide support and encouragement to people who are just beginning to deal with limb loss. So far, more than 1,000 peer visitors have been trained. In a phone survey of individuals who had received a peer visit, 88 percent of respondents rated the overall quality of the visit as excellent; 100 percent reported that the visit had a positive effect on their ability to adjust to losing a limb; 73 percent said they felt better informed about amputation; and 85 percent said that as a result of the visit they knew where to find more information to help them adjust to losing a limb. A survey of veteran amputees at Walter Reed Army Medical Center indicated that among those interviewed, peer visitation ranked second only to overall rehabilitation in level of importance.

• The Amputee Coalition's Promoting Amputee Life Skills (PALS) program is an eight-week self-management course for people with limb loss. In a joint study with Johns Hopkins University Bloomberg School of Pubic Health, the PALS course was found to have a dramatic effect on the quality of life of people with limb loss. Of those participants in the intervention group who completed the eight-week course, 70 percent reported that the PALS program helped them better manage their mood; 58 percent reported that it helped them manage the physical pain associ­ated with living with limb loss; 74 percent reported that it helped them manage other problems associated with limb loss; and 76 percent said PALS helped improve their quality of life. Additionally, 78 percent stated that PALS was more helpful to them than attending an amputee support group; 95 percent said that they would recommend PALS to a friend; and 73 percent said that PALS was more important than other available services to help them manage losing a limb.

To continue expanding public health activities on behalf of people with limb loss, the NLLIC intends to establish a limb loss registry. This registry will capture the incidence and prevalence of limb loss, promote a better understanding of limb loss, and provide data that will be useful for research on preventing limb loss, improving limb loss management, and developing standards of care.

Current trends in the United States are leading to a significant incidence and prevalence of persons living with limb loss (amputation) and subsequent dependence on artificial limbs/prosthetics. The number of people living with the loss of a limb will more than double by the year 2050 to 3.6 million. The primary factors contributing to this increase are increasing rate of diabetes, increasing rate of peripheral vascular disease and military/war events.

No comprehensive or integrated database exists on the national or state level that reflects amputee care within the civilian population. There is no mechanism for limb-loss prevention advancement, cost reduction, or care improvement for civilians affected by limb loss. Although limb loss/deficiency statistics are available to the public through the ACA and CDC, the data is aging and will be obsolete without a future mechanism for capturing and retaining current data.

The Veteran Affairs Healthcare System has created the National Prosthetic Patient Database (NPPD) that goes far to address this issue for veterans. The NPPD transmits data to a centralized database regarding prosthetic costs, patient visit information and the prosthetic vendor. When analyzed in conjunction with the VA's National Patient Care Database (NPCD), powerful information may be derived regarding prosthetic prescriptions, patient care trends and marketing influences. Although the NPPD/NPCD is clearly a system reflective of national geographic and VA Healthcare System trends, the uniqueness of its study population (veterans) and their access to free or low-cost prosthetics and healthcare is less reflective of the US civilian amputee population at large.

Given pending and current trends in healthcare reform, a more compre­hensive and accessible amputee national database is proposed, based on the NPPD/NPCD framework, and structured around hospital discharge records, prosthetists-orthotists' certification boards and Medicare/Medicaid billing transactions. Toward this end, the conceptualization of a National Limb Loss Registry is presented, which is based on the framework of the Veteran Affairs NPPD, and uses pre-existing state health services database fields and practices.

The purpose of the National Limb Loss Registry is to provide knowledge that will advance limb loss prevention, improve limb loss care and reduce the costs associated with limb loss.

A national registry would help us:

• Monitor trends over time
• Measure and track epidemiology
• Identify limb loss patterns that may be preventable
• Guide care standard development for care improvement
• Guide priorities for allocation of resources for limb loss care
• Advance research initiatives
• Identify limb loss impact on family, workforce and society
• Assess and monitor disparities

Given the looming threat in the coming decades of an explosion of chronic diseases, such as diabetes, which can lead to limb loss, attaining these goals is paramount. Establishing this registry will require ad­ditional funding from the CDC. This funding is critical to providing public health services to people with limb loss because of several factors, some of which are listed above. The ACA's legislative team has already begun meeting with key lawmakers to discuss the need for and benefits of establishing a national limb loss registry.

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The NLLIC has proven to be a successful tool in helping to educate and empower people with limb loss in order to help them not only survive amputation, but also to thrive as they work to reach their full potential at school, at church, at home and at work. The ACA is grateful to the CDC for their continued support.