Psychosocial Considerations in Hand/Arm Transplantation
by Stephen T. Wegener, PhD Department of Physical Medicine and Rehabilitation Johns Hopkins School of Medicine
There is great interest in hand transplantation as a way to increase function and quality of life for people who have had upper extremity amputation due to injury. This transplantation surgery is an exciting new strategy, with approximately 70 arm transplants having been performed around the world to date.
This advancement in medical care as many potential benefits including better function and appearance with related improvement in social and work activities. As with any serious medical procedure or surgery there are potential risks. These include the possibility that the transplant will trigger an immune response that signals rejection. This immune response can be managed by increasingly effective medications; however, it remains a major concern of clinicians and patients. Other risks to be managed are increased pain and discomfort due the procedure and rehabilitation, ongoing problems with extremity function, and drug side effects. Scientists and clinicians are working to increase our understanding of tissue transplantation, refine surgical technique and define the most effective rehabilitation strategies.
Often overlooked in our enthusiasm for this new technology is the need to understand the psychological and behavioral challenges faced by patients and families. In addition to fear of rejection there are other challenges:
Acceptance of donor arm/hand. A transplant, unlike a prosthesis, presents unique a psychological challenge. The transplant recipient will need to accept a new arm/hand from a donor who has died. Some individuals may be uncomfortable, while others may experience gratitude. Understanding and managing these reactions are particularly important as, unlike other transplanted organs, the donor arm/hand is always visible and thus may serve as a reminder of the donor.
Body image. Experiences of one’s own body are the basis for all other life experiences. The disruption of body image related to amputation or injury can have significant and long-lasting impact on the individuals’ sense of identity and relationships. Anxiety may be experienced over the changes in one’s body image that occur as a result of transplantation. High levels of body-image anxiety can lead to depression, reduced quality of life, lower self-esteem and greater public self-consciousness. Transplantation has the potential to repair compromised body image. However, we have more to learn about the process of how a recipient incorporates the transplanted hand/arm into one’s body image.
Social responses. People with burn injury and/or amputation are well aware of the responses of others to differences in appearance. It is likely that individuals who receive transplanted limbs still will be perceived as “different”. The recipient will need to develop the skills to manage the reactions of others in a variety of social situations.
Rehabilitation and medication adherence. After transplant the individual faces a long rehabilitation process as the nerves reconnect and the person undergoes prolonged therapy to gain use of the new limb. As anyone who has tried to lose weight or maintain an exercise program knows, sticking with a long term daily activity is hard. We need to discover the best ways to help people learn to use their new arm and how to support them during this prolonged rehabilitation process.
In addition, transplant recipients need to take medications for long periods of time to prevent rejection. We know that non-adherence is an issue for 30-50% of other transplant patients. Reasons for non-adherence may be medication side effects or poor understanding of the treatment program. In addition to being aware of the challenges that can arise, we need to recognize that patients are also resilient. Factors such as self-efficacy, hope, optimism, perceived control, self-esteem, sense of meaning in life and social support can help transplant patients adapt.
For all of these reasons transplantation programs include psychological assessment and ongoing psychosocial support as part of their protocols. Those in the burn community know well the importance of addressing the psychological issues in recovery and connecting to others who are facing similar challenges. There is very little data on the psychological dimensions of hand/arm transplantation. To address this knowledge gap there are several research projects underway. In one of these, Sally Jensen, PhD at Northwestern University is leading a project to explore amputee perceptions of hand/arm transplantation and the psychosocial and quality of life factors that may influence those perceptions. Projects like these and long term follow up of transplant recipients will help us learn from patients and their families how best to manage the psychosocial challenges related to this medical advancement.
Article Written by: Stephen T. Wegener, PhD, ABPP Associate Professor and Director, Division of Rehabilitation Psychology and Neuropsychology Department of Physical Medicine and Rehabilitation The Johns Hopkins School of Medicine
As a rehabilitation psychologist, Dr. Wegener specializes in the psychology of pain management. His research focuses on projects to improve function and reduce disability for persons with chronic illness and impairments including occupational musculoskeletal injuries, rheumatic disease, spinal cord injuries, and limb loss. He has also developed cognitive-behavioral therapy and selfmanagement interventions that provides treatment or prevents pain associated with disability; including the role of positive variables such as denial, positive coping, hope and spirituality.