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Psychological and Social Outcomes
Hand/arm transplantation can restore a patient’s feeling of wholeness and help overcome psychological or social barriers.1,2
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"Because now I can do more than I imagined. Like throw a football. Play baseball. Or, I don’t know, do a handstand. So when I got my hands, it’s like, here’s the piece of my life that was missing. Now it’s here. Now my life is complete.”
- Zion Harvey, 8-year-old boy who received double hand/arm transplants in 2015
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“I couldn’t wish for anything better. It’s better than a lottery win because you feel whole again.”
- Chris King, who received hand transplants in 2016
Because hand/arm transplantation is somewhat new, there is not a lot of published information on how recipients feel about, identify with, or cope with their hand/arm transplant. Most tools for measuring psychological and social outcomes after surgery are not specific to hand/arm transplantation. However, one scoring tool that is specific to hand/arm transplantation is the Hand Transplant Scoring System (HTSS), which assesses psychological outcomes related to appearance, social behavior, effectiveness, body image, and overall mental health.³
It is possible for hand/arm transplant recipients to improve their:
Social Interactions: Humans rely on social connections to promote health, wellness, and a sense of belonging.⁴ Losing an upper limb can have significant impacts on social relationships by creating feelings of isolation and separation from others who may not understand the experience.⁵ Some patients who undergo hand/arm transplantation say they feel more confident in social situations,¹ or they feel more connected to others because they feel they can relate again through tasks such as feeding, dressing, grooming, and work.⁵ Additionally, working with and around a trusted group of peers and clinicians can help promote the self-confidence needed to live life to its fullest after going through a life-altering event such as limb loss.⁶
Affection and Intimacy: Affection and intimacy can be expressed through physical touch such as shaking hands, hugging, touching, patting the back of another, and caressing, which are very important to an individual’s overall wellbeing. Some patients have noted that receiving a new limb through transplantation led to increased self-confidence and higher self-esteem, which reduced feelings of loneliness.⁵
Body Image: Body image refers to how you feel about yourself or your physical appearance and is related to self-confidence.⁷ Body image can include feelings of having a “complete” or “whole” body.¹
It takes time for hand/arm transplant recipients to get used to seeing, using, and taking care of their new hand/arm. Most patients go from being pretty functional with their prosthetics to a 3-6 month period immediately post-transplant (or more for higher-level transplants) of complete dependence on caretakers while nerve regeneration occurs. Therefore, some hand/arm transplant recipients can find the first three months after the transplant to be especially hard to psychologically adjust to their new hand/arm.⁸ Every recipient is different in how they adjust to the new hand/arm. Some recipients get frustrated with the long and intense rehabilitation process. In some cases, recipients have experienced psychological and social outcomes including depression, anxiety, family problems, anger issues, drug or alcohol misuse, or suicide.2,8,9 Individuals who follow the prescribed regimens for anti-rejection medicines and rehabilitation therapy are ideal candidates for hand/arm transplantation.10
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“They’re my hands. They really are my hands. My blood’s going through them. My tendons are attached. They’re mine. They really are… It was just like the hands were made-to-measure. They absolutely fit. And it’s actually opened a memory because I could never remember what my hands looked like after the accident because that part of my brain shut down.”
- Chris King, a 57-year-old man who received hand transplants in 2016
Average Quality of Life Scores for Hand Transplant Recipients (n=5) and Prosthesis Users (n=7)
Some hand/arm transplant recipients say that hand/arm transplantation has positively affected their life. Feeling ‘whole’ and ‘balanced’ are words that recipients have used to describe their lives after getting their transplants.¹¹
Transplant Recipients’ Experiences
One hand/arm transplant recipient was disappointed with his transplant and did not feel like his hand “fit in” with the rest of his body. The recipient was not able to positively identify with his new hand, and refused to adhere to the medical regimen the doctors prescribed. Because the recipient was unable to adjust and accept the hand as his own, he had to get the hand/arm re-amputated due to rejection.¹² Learn more about the emotional and social problems and mental health changes that transplant recipients might experience.
One hand/arm transplant recipient had very positive experiences with his new hands. However, his spouse was not able to adjust to her partner’s new hands or new life of fame.¹²
Overall, little is known about hand/arm transplant recipients who had negative experiences. It may be that negative experiences do not get reported or published, or that fewer recipients have had negative experiences.
Click Below for More Videos
Videos of Health Care Professionals
Joe Butkus, UE Transplant Occupational Therapist, talks about social limitations of hand/arm transplantation.
Dr. Scott Tintle, Chief of Hand Surgery, discusses positive psychological outcomes of hand/arm transplantation.
Videos of Hand/Arm Transplant Recipients and People with Limb Loss
Mr. Pollock, a bilateral, upper limb transplant recipient (11 ½ years after transplantation), talks about his mindset as an upper limb transplant recipient.
References
Sources
Hautz, T., Messner, F., Weissenbacher, A., et al. Long-Term Outcome After Hand and Forearm Transplantation – a Retrospective Study. Transpl Int 2020;33: 1762-1778.
Salminger S, Sturma A, Roche AD, et al. Functional and Psychosocial Outcomes of Hand Transplantation Compared with Prosthetic Fitting in Below-elbow Amputees: A multicenter cohort study. PLoS One. 2016;11(9):1-13.
Lanzetta M, Petruzzo P. Comprehensive Functional Score System in Hand Transplantation. In: Lanzetta M, Dubernard JM, eds. Hand Transplantation. Milan: Springer-Verlag; 2007;355–62.
Smith KP, Christakis NA, Social Networks and Health. Annual Review of Sociol 2008;34:405-429.
Bramstedt KA. A Lifesaving View of Vascularized Composite Allotransplantation: Patient Experience of Social Death Before and After Face, Hand, and Larynx Transplant. J Patient Exp. 2018;5(2):92-100.
Messinger S, Bozorghadad S, Pasquina P. Social relationships in rehabilitation and their impact on positive outcomes among amputees with lower limb loss at Walter Reed National Military Medical Center. Journal of Rehabilitation Medicine. 2018 Jan;50(1):86-93.
Breidenbach WC. Hand Transplantation. Med J Aust. 2013;199(4):228-229.
Jowsey-Gregoire SG, Kumnig M, Morelon E, et al. The Chauvet 2014 Meeting Report: Psychiatric and Psychosocial Evaluation and Outcomes of Upper Extremity Grafted Patients. Transplantation 2016;100(7):1453-1459.
Kumnig M, Jowsey-Gregoire SG. Key Psychosocial Challenges in Vascularized Composite Allotransplantation. World J Transplant 2016;6(1):91.
Kumnig M., Jowsey-Gregoire SG., DiMartini A. F. Psychological Aspects of Hand Transplantation. Current Opinion in Organ Transplantation 2014;19(2):188-195.
Breidenbach WC, Gonzales NR, Kaufman CL, et al. Outcomes of the First 2 American Hand Transplants at 8 and 6 Years Posttransplant. The Journal of Hand Surgery. 2008;33(7):1039-1047.
Slatman J, Widdershoven G. Hand Transplants and Bodily Integrity. Body & Society. 2010;16(3):69-92.