Q&A: Caring for Patients with Upper-Limb Loss
There are an estimated 15 times more people with lower-limb amputations than upper-limb amputations, according to the fact sheet "Upper Limb Loss: Questions to Ask Your Prosthetist," published in 2009 by the Amputee Coalition Upper Limb Loss Advisory Council. Because of this disparity, it is not surprising that there are fewer rehabilitation professionals with targeted experience helping patients with upper-limb loss adapt to their new realities. In addition, while the rehabilitation approaches for upper- and lower-limb prosthetics care share some elements, upper-limb rehabilitation involves some unique considerations. To provide practitioners with a broader understanding of some of these factors, The O&P EDGE asked five upper-limb prosthetics specialists to share their expertise.
Q: During the first patient visit, what are your primary concerns for an individual with an upper-limb amputation?
A: The experts agreed that there is no single answer to this question, as a multifaceted approach is essential. Diane Atkins, OTR, FISPO, assistant clinical professor, Department of Physical Medicine and Rehabilitation, Baylor College of Medicine, Houston, Texas, says, "There are several questions I want to address: Have they, or are they, receiving experienced and comprehensive medical management? Is the residual limb ready for a prosthesis, or is additional healing required? Has he or she had adequate occupational therapy and completed a comprehensive pre-prosthetic program of shaping/shrinking, range of motion (ROM), and muscle strengthening exercises, desensitization, etc.? What information does he or she have regarding an upper-limb prosthesis, and is the prosthetist prepared to give a comprehensive and unbiased overview of options?" Atkins also addresses psychological wellness and underscores the importance of discussing the patient's goals.
John Miguelez, CP, FAAOP, president and senior clinical director, Advanced Arm Dynamics, headquartered in Redondo Beach, California, looks at the first patient visit from a variety of angles and stresses establishing good communication from the beginning. "We try to listen to the patient and then educate each person about his or her prosthetic options, which are based on the individual's physical and psychological evaluations and his or her rehabilitation goals."
Like Atkins, Miguelez says the patient should be empowered to make a decision regarding his or her prosthetic solution based on an unbiased approach. "We try to present all the options available to maximize the patient's rehabilitation potential, without a preference for a particular solution."
Q: What is the ideal fitting window for upper-limb amputees?
A: Several of our experts cited current literature on the subject, recommending that patients should be fitted within three months of having an upper-limb amputation. Tiffany Ryan, MOT, OTR/L, rehabilitation coordinator, Advanced Arm Dynamics, says that for her, the prosthetic rehabilitation process starts before the fitting takes place. "Ideally, I want to see education in preparation for the fitting occur before the amputation when possible. In the case of traumatic amputation, education can begin at the patient's bedside," she says. "In the early stages, the patient may be physically and emotionally unable to participate in training. Prosthetic rehabilitation education may be shared with the patient's family members and caregivers in these cases."
Atkins also says that early fitting is ideal. She says, "Following three months post-amputation, the individual has established 'unilateral patterns of independence,' and it becomes more difficult to think in a two-handed, bimanual manner."
Not all practitioners agree that the three-month post-amputation fitting timeframe is crucial. Randy Alley, CP, LP, CEO and chief prosthetist of biodesigns, Thousand Oaks, California, says, "While I respect the work of the authors who furnished the data supporting [the 90-day fitting window], I feel it is far too simplistic to say this is the ideal fitting window because a multitude of factors involved in each specific case have a profound influence on successful adoption of prosthetic solutions.... The ideal fitting window should be as soon as conditions are optimum, and it is up to the patient, his or her family, friends, caregivers, technology, finances, and a whole host of other variables to determine this."
Q: What unique concerns do individuals with upper-limb amputations face that lower-limb patients do not?
A: Ryan explains, "Our hands are a primary way we express ourselves and receive so much of our sensory input. We use our upper limbs to connect with the world such as shaking hands or hugging someone. And, unlike lower-limb loss, upper-limb loss is more visible to the outside world. Patients don't necessarily have the option to wait until they are more comfortable to reveal the loss...." Atkins also points out the role of our upper limbs in functional terms. "One's ability to be independent in activities of daily living (ADL) and participate in sports and recreational activities is dependent upon one's hands and arms. Gross and fine-motor dexterity requirements in unilateral and bilateral tasks are dependent upon one's hands and arms."
Miguelez adds that there may be differences in the psychological adjustment to amputation. "Many lower-limb amputations are the result of disease, so the process leading up to the amputation is gradual—there is pain, disease, and a period of adjustment. However, upper-limb amputations are most often the result of trauma, and that sudden loss has a very different psychological impact. We try to provide the resources to deal with that emotional factor and surround each patient with a support system."
Q: Is there an aspect of rehabilitation care that you find is frequently overlooked when working with upper-limb amputee patients and how do you address it?
A: Atkins cites a comprehensive team approach as essential, a team that not only includes an experienced prosthetist and occupational therapist (OT), but also a well-informed physician who is versed in prosthetic alternatives and can support a letter of medical necessity. "Has OT prosthetic training been prescribed? Too often this is not the case, and in instances of a technologically advanced prosthesis, utilizing an upper-limb prosthesis is destined to fail without proper prosthetic training," she says. "To address this, prosthetists are becoming increasingly aware of what OTs can provide [in terms of] prosthetic training, increasing functional independence, and maximizing the full potential of the individual not only in ADL, but also in vocational and avocational activities."
Miguelez agrees, adding that communication within that group is essential. He says, "If I were to boil it down to one thing [that's overlooked], it would be communication—really listening to the patient and utilizing the rehabilitation team. Communicating with the patient is essential, of course, but also communicating with the whole rehabilitation team and coming up with solutions as a group that lead to the patient's best rehabilitation outcome."
For some, the most overlooked area lies not in the rehabilitation process but in the technology itself. Alley, for example, responds, "Interface, interface, interface. Most upper-limb socket designs are decades old and are assumed to still be relevant today in a world of rapidly advancing technology. It's time to admit we haven't innovated enough in this area. I believe the socket is as or more important than the componentry."
Chris Lake, CPO, LPO, FAAOP, clinical director, Lake Prosthetics and Research, Euless, Texas, also says that one of the most frequently overlooked aspects of upper-limb rehabilitation care lies in the prosthetic device, specifically in preparatory fittings. "The use of prototype fittings, first introduced in the mid-1980s by Terry Supan, CPO, FAAOP, has become a core component of upper-limb specialist driven fittings but is not as common in general practice," Lake says. "While the prosthesis is fit quickly, often in a day or two, it is not finished for several weeks or months after the initial preparatory delivery. This timeline provides an opportunity to carefully consider and incorporate input from the patient, family, therapist, and other team members. The patient loses out on subtle changes that could be of significant benefit when the prosthetist moves directly into a definitive prosthesis."
Q: What do you find to be the greatest challenge when working with individuals who have had upper-limb amputations?
A: Patient expectations were noted by all of our experts as being one of the greatest challenges they face when working with individuals who have had upper-limb amputations. Ryan says, "The biggest challenge I find with my patients is the componentry that is available to them today may not meet their expectations. They may have seen something in print or on television that isn't available on the market yet, or they may have a limb presentation that is not appropriate for the type of component they have seen advertised. We begin education right away to explain all of their prosthetic options and allow for lengthy discussions, giving the patient the opportunity to explore the particulars of each choice."
Miguelez adds that patients don't always fully understand the limitations of the technology. "I think that sometimes patients read about advances and expect to have the same functionality they had before losing a hand, but we're not there yet," he says.
Lake says that durability issues are among his chief challenges. "There is a need for reliable and durable upper-limb prosthetic componentry. This is an incredibly exciting time in the advancement of upper-limb prosthetic technology, but cutting-edge technology is only meaningful if it can truly withstand the activities necessary for daily living."
Andrea Spridgen can be reached at