The result of prosthetic research ideally is better patient care and outcomes. The chain starts with research studies, then links clinically relevant findings into clinical practice, which positively impacts function and quality of life for persons with amputation-the end of the chain. Thus persons with amputation are stakeholders in prosthetics research.
To view prosthetics research from the consumers’ perspective, The O&P EDGE spoke with Kendra Calhoun, president and CEO of the Amputee Coalition.
Interestingly, some of the views she expressed regarding research priorities echo those of O&P researchers and clinicians: the need for evidence-based outcomes research, funding for research, and the rapid translation of research findings into clinical practice and better patient outcomes.
From the Amputee Coalition’s point of view, what do you think should be the top priorities in O&P research?
Calhoun: “The most important area we would recommend is research into why amputees often do not wear their prosthetic devices. We know that pain and discomfort, as well as instability concerns, are often cited to us by amputees as prime reasons for non-use of their prosthetic devices. This would indicate that while many advances have been made, amputees continue to look for better fit, more lifelike functionality, and better matches of prosthetic components with their individual needs.
“We believe there is significant cost savings if amputees remain active in their homes, their communities, and their place of work. We would like more research to better quantify and qualify long-term healthcare savings; e.g., prevention/reduction of secondary conditions by increasing fit, comfort, and stability-and thus usage of the prosthetic device. This evidence-based data would also support reimbursement systems for prosthetic devices that are medically necessary for individual amputees.”
What would you like to see in the future regarding prosthetic research?
Calhoun: “From the consumer perspective, advanced prosthetic devices are of no use unless consumers have access to them. This means practical translation of advancements from bench to consumer with correlated evidence-based outcomes that ensure rapid uptake by insurers.”
Are there other areas of research the Amputee Coalition would like to see addressed?
Calhoun: “First, while the O&P community has significantly improved the quality and availability of programming and patient education surrounding the issue of psychosocial adjustment to losing a limb, there remains much work to be done. Research in the area of rehabilitation and adjustment to losing a limb consistently demonstrates a link between amputees’ psychological and social well-being and their functional status and overall outcomes. This research suggests that improvements in the quality of life for persons with limb loss go beyond technological advancements in prosthetic devices. Improving quality of life must also include social reintegration post-amputation and some form of psychological counseling.
“While some O&P professionals may view such activities as beyond their professional duties, amputees view their prosthetist as a major source of information relating to living with limb loss. In fact, prosthetic users, although they acknowledge their role in the quality of their prosthetic care, indicate that there is an immense need for comprehensive information regarding the path of recovering from losing a limb and the full array of prosthetic, rehabilitative, treatment, and possible outcome options available to them.”
How can clinicians more effectively assist amputees in these areas?
Calhoun: “The Amputee Coalition offers the O&P community a unique opportunity to provide the information and psychosocial counseling new amputees want and need through our peer support program, patient education materials, and self-management classes, which have been proven to improve the quality of life for people with limb loss. Thus, strengthening the ties between individual O&P providers and the Amputee Coalition is one of the most important steps to take in order to meet the needs of amputees in the United States.
“Secondly, the O&P community can actively work toward establishing a patient-centered continuum of care for amputees. Ideally, this care continuum would begin prior to the actual amputation procedure and extend well beyond discharge into the community. O&P providers play an important role within this care continuum, communicating with surgeons to ensure optimal post-operative functional outcomes and providing the patient education and self-management opportunities I just mentioned.”
Is the Amputee Coalition involved in any initiatives related to research?
Calhoun: “The Amputee Coalition Limb Loss Task Force met for the first time last year in Washington DC to develop a series of recommendations that will serve as the roadmap to limb-loss prevention and improved care for amputees across the country. The primary driver for us to host this summit is the lack of a comprehensive, integrated plan on the national level that reflects amputee care within the civilian population. There is no current mechanism for limb-loss prevention advancement, cost reduction, or care improvement for persons affected by limb loss. Our Task Force, consisting of experts in limb loss-physicians, podiatrists, nurses, physical therapists, prosthetists, and researchers from the public sector, the military, and the federal government-recommended a four-point action plan.”
Amputee Coalition’s Four Point Action Plan:
- Implement a blueprint for limb-loss prevention.
- Host a consensus conference to define national optimal care guidelines for amputees.
- Develop a national research agenda on limb-loss prevention and amputation care.
- Create a model amputee rehabilitation/community reintegration and early intervention system to be implemented in hospitals around the country.
“We will be working over the coming years to develop and implement action plans for each of the four initiatives.”