Preparing Young Patients With Cancer for Amputation
May 2019 Issue
The epidemiology and outcomes associated with limb absence in the pediatric population are very different than those of the adult population. Among youth, congenital limb deficiencies outnumber acquired amputations by more than two to one.1 Further, in contrast to older adult populations where prosthetic usage and benefit are sometimes uncertain, usage rates of prostheses in the pediatric amputee population are very high, often exceeding 12 hours per day in activities such as swimming, running, cycling, and basketball.1
Acquired amputation in children can stem from traumatic injury or biologic factors.2 Of these, traumatic injury is the more common, with national statistics suggesting approximately 1,000 new cases each year from crush injuries, power tools and cutting instruments, lawn mower injuries, other machinery, and motor vehicle injuries.1 With respect to amputation due to biologic factors, cancer is the most common cause, with the highest incidence occurring during the second decade of life.1 Recent estimates from the American Cancer Society predict roughly 15,000 new cases of childhood cancer annually in people under the age of 20.2 Of these, 400-500 cases will be cancerous tumors of the bone such as osteosarcoma and Ewing sarcoma.2
Childhood amputation presents a unique set of challenges to the developing child or adolescent. With respect to physical function, amputation fundamentally alters children's ability to ambulate, play, and touch with their involved extremities at an age characterized by high physical development and activity. These limitations may be more disruptive for adolescents who might require additional assistance or physical accommodation at a time when they are seeking to establish their own independence. There are also emotional impacts, experienced at a time of additional vulnerability when children are more subject to the perceived attitudes of their peers and increasingly aware of their own body image.
Recognizing the unique challenges associated with pediatric amputations secondary to cancer, a systematic review was recently undertaken to identify the key considerations in preparatory interventions to reduce the pre- and post-operative distress associated with amputation in pediatric cancer patients.2 This article explores these considerations to better appreciate the unique challenges faced by these patients and their family members.
Scoping the Available Data
Notably, there is little objective evidence in this domain. While several authors have stressed the importance of preparatory interventions and the role they might play in reducing emotional distress for the affected child and his or her family members, systematic review found little empirical evidence. Rather, aggregating the findings from the five identified articles only yielded general themes to facilitate a broader consideration of preparatory interventions in this population.2
Interdisciplinary and Family Communication
Early case reports have suggested the value of interdisciplinary collaborations between medical and psychological teams, acknowledging the specialty training associated with both disciplines. For example, Clerici et al. further divide psychological resources into medical psychology and clinical psychology. The former included the training of the oncologist, nursing staff, social assistants, and teachers to provide first-line emotional support, and the latter was provided by a clinical psychologist capable of more structured psychotherapy sessions.3
Recognizing the important roles of caregivers in providing emotional stability and confidence, Clerici et al. also emphasize the importance of introducing the parents of the affected children to the need or possibility of an elective amputation prior to informing the patient. Such conversations should include alternative treatment options and the relative risks and benefits associated with each, supported by appropriate psychological resources as needed.3 This allows the parents to experience their initial emotional reaction to the event in a private setting in which they don't need to constrain their reaction in consideration of their child, and their child is not subjected to their raw, initial reactions. Once they have been able to better process this possibility and its associated implications, they are in a better emotional condition to consult with the interdisciplinary team about the nuances of their child's personality and the best way to disclose this information to him or her.3 Further, having processed this development, the parents are better positioned to be a source of stability for their child as he or she, in turn, copes with understanding the upcoming event.
Psychosocial Screening and Assessment
The second construct identified by Loucas et al. in their review involves the specific consideration of those factors that may impact a child's initial reaction and subsequent adjustment to amputation. These include the child's age, temperament, cognitive capacity, developmental stage, prior experience and reaction to medical procedures, and the intended level of amputation.2 In addition to screening the child, external variables such as the child's family support and likely parental response may further impact a child's capacity to cope with the amputation.
For example, Clerici et al. describe several cases with individual psychosocial responses to an elective amputation to manage underlying cancer. One case involved a 15-year-old girl with osteosarcoma of the tibia who helped in a hair dresser's shop and was concerned about her physical appearance. During her first hospitalization, she found the potential side effects of her treatments, such as hair loss and potential scarring, more concerning than the prognosis of the underlying tumor. Predictably, when amputation was eventually recommended, it was labelled as "absolutely unacceptable" and she and her mother identified another treatment center who treated the cancer with a more conservative, though potentially inadequate, course of treatment.Clerici et al. conclude that in this case, amputation "would probably have caused an identity crisis beyond the patient's emotional resources."3
In contrast, another 15-year-old girl who had undergone chemotherapy and complete excision of a tibial osteosarcoma three years prior approached the tumor recurrence and recommendation for elective amputation differently. She was relaxed throughout the process, encouraging her mother to calm down rather than pursue psychological support. However, while accepting of the amputation, she refused the planned subsequent chemotherapy, likewise refusing hospitalization and further consultation with her physicians. Her physicians ultimately acknowledged her maturity and understanding of the risks associated with her partial compliance. As with the prior case, this individual required some degree of control over her own healthcare decisions, but her threshold appeared at a different stage of her care than the other girl's.3
These two cases, each involving a 15-year-old girl with lower-limb osteosarcoma, demonstrate how temperament, maturity, and prior medical history might impact an individual's course of care.
In a survey of 33 adolescent patients who had lost a limb to cancer, 88 percent felt that they understood the reason for the surgery and 82 percent indicated that they were involved in the pre-operative decision-making.4 However, only about half of the respondents reported a pre-operative understanding of the functional limitations they would experience after their amputations.4 This data suggests that some oncologists may be better versed in surgical outcomes than post-surgical rehabilitation outcomes and underscores the value of including the range of post-amputation functional outcomes in pre-operative patient education.
Within the construct of education, these same survey results indicate that for nearly half of the children, academic and social aspects of school life presented some challenges. Many children had trouble keeping up with schoolwork upon their return and still more had trouble resuming relationships with their classmates. While these challenges diminished with time, the authors recommend tutoring during hospitalization to compensate for time out of school and that class-mates receive targeted education about amputation during the child's absence to minimize social stigmatization upon the patient's return to the classroom.4
In their systematic review, Loucas et al. mention filmed modeling, play therapy, emotive imagery, hypnosis, and behavioral techniques as commonly utilized intervention strategies to help improve a child's coping skills both before and after amputation surgery.2
The value of peer modeling was demonstrated in another of Clerici et al.'s case studies. In this example, a 17-year-old girl had a relapsing tumor originally diagnosed at age 14. Having left school several years before to undergo numerous cycles of chemotherapy and radiotherapy, she valued her time with friends, including singing and dancing in a folk group. When amputation was suggested, she was upset and refused consent. However, further medical consultation confirmed the need for amputation. A turning point in this patient's willingness to consider the intervention occurred when the girl inquired, "How do you accept living without a leg?" and "How did other patients make it?" Only after she learned about the experiences of other individuals was she able to consider the procedure for herself.3
In a related case, a 13-year-old girl with osteosarcoma of the ankle was introduced to a boy who had undergone the same amputation a few months earlier. The boy shared his experience, even removing his prosthesis to show her how it worked. This facilitated her acceptance of the surgery and rapid adaptation to the prosthesis.3
Another representative case of creative child intervention is seen in the example of a 12-year-old boy with osteosarcoma in one of his legs. At the time of his diagnosis, he was an avid soccer player, playing on a team coached by his father and dreaming of playing professionally. This child's acceptance of his new condition appeared catalyzed by his father's attempt to shift his goals toward something better suited to his physical limitations. "My dad bought me a radio-controlled car. It's wonderful. I can take it apart and reassemble it in no time. I'm not that fond of soccer anymore…I'd like to become a mechanic when I grow up."4
In addition to interventions tailored to the psychological needs of the children and adolescents undergoing amputation, interventions tailored to the parents and family members should also be considered. In their survey of 33 youths who had lost a limb to cancer, Tebbi et al. report the majority of these adolescents felt that their parents were afraid the illness would be terminal or that the child would not be able to function after an amputation.4 This observation further underscores the value of informing the patients and family members of the functional capacities associated with prosthetic use.
Encouragingly, the majority of survey respondents said their parents were supportive and helped them cope with their illnesses. However, of some concern, half of all patients stated their parents preferred not to talk about the illness or denied the diagnosis, thinking it was likely a mistake.4 Such dispositions may compromise a parent's capacity to provide optimal psychological support during this challenging episode of care.
In a thoughtful approach to encouraging positive family dynamics and ensuring parents are prepared to provide a stable source of comfort and encouragement, Jaraway et al. report on their approach of allowing parents to view their child in the operating room following amputation but before the child awakens from anesthesia. The rationale is to allow parents to experience and express their grief, anger, shock, and full emotional reaction to their child's post-surgical condition in a safe environment, insulating the child from these initial reactions.5 Permitted this initial reaction, parents are presumably better prepared to provide the necessary emotional support for their child as they encounter his or her new body image post-amputation. While the authors suggest additional research on this pilot approach is needed, parents who have had this opportunity have reported it to be a valuable and positive preparatory experience.5
The devastation of pediatric cancer, coupled with the devastation of amputation, is difficult to overstate. While empirical guidelines related to preparing the individual youth and the family members have not been established, a recent systematic review has identified a number of key considerations.
Parents and caregivers can be empowered to be better sources of comfort and support when they are allowed to come to an awareness of amputation, both in principle and in physical appearance, in a setting insulated from their child. When parents are able to experience and, to some extent, process these elements, their children undergoing amputations are not subjected to the raw emotions of their parents in these initial moments of realization.
Parents and children alike should be made aware of both the functional limitations and remaining physical capacities associated with amputation and prosthetic rehabilitation. Peer mentoring represents one powerful means of communicating these considerations. Finally, all efforts must be respectful of the individual presentation of the youth with respect to age, medical history, maturity, family support, and temperament.
Phil Stevens, MEd, CPO, FAAOP, is a director with Hanger Clinic's Department of Clinical and Scientific Affairs. He can be contacted at email@example.com.
1. Lovegreen, W., D. Murphy, W. Smith, P. Stevens, and J. Webster. 2016. Lower Limb Amputation and Gait. In Cifu DX editor: Bradoom's Physical Medicine and Rehabilitation, ed 2, Philadelphia, Elsevier, pp. 191-223.
2. Loucas, C., S. Brand, S. Bedoya, A. Muriel, and L. Wienter. 2017. Preparing youth with cancer for amputation: A systematic review. Journal of Psychosocial Oncology 35(4):483-93.
3. Clerici, C., A. Ferrari, and R. Luksch et al. 2004. Clinical experience with psychological aspects in pediatric patients amputated for malignancies. Tumori 90:388-404.
4. Tebbi, C., A. Petrilli, and M. Richards. 1989. Adjustment to amputation among adolescent oncology patients. Journal of Pediatric Hematology/Oncology 11(3):276-80.
5. Jaraway, D., S. Perry, M. Phillips, P. Ziegler, A. Wolgemuth, and S. D. Scott. 2013. Preparing parents to help support their child post-amputation for bone cancer. ORNAC Journal 31(4):13