Youth with pediatric limb deficiencies represent a heterogeneous population with a broad range of presentations. High levels of resiliency and overwhelmingly positive adjustment unite this population.^1,2 Health care professionals caring for the pediatric limb deficiency population have the privilege and challenge of working with patients and their families during the most dynamic phase of human development. Working with patients with pediatric limb deficiency can be intensely rewarding for those who provide their care. These youth are able to interact meaningfully with their medical care clinicians and can be models of the human ability to adapt and grow to meet challenges.

Pediatric patients with limb deficiency differ considerably from adults with limb deficiency, with the pediatric population demonstrating higher functioning in psychological, social, and other domains. Health care clinicians working with children with limb deficiency benefit from an understanding of the developmental, psychological, social, and socioeconomic influences on the lives of their patients. This knowledge can improve the collaborative efforts of multidisciplinary medical teams, parents, and patients as they plan for future orthopaedic care.

The psychosocial well-being of youth with limb deficiency is imperative and also includes psychological adjustment, including social, emotional, academic, and overall well-being. It is important to review the socioeconomic influences of and developmental considerations for youth with limb deficiency. There are several ways the health care clinicians and parents can promote positive identity, social skills development, and graduated independence in health care behaviors.

Although the phrase “children are not small adults” applies to most medical fields, the phrase “child amputees are not adult amputees” rings especially true. There are considerable differences between the adults and children with limb deficiency, including etiology of the limb difference, global health status, developmental processes, comorbid mental health concerns, and psychosocial functioning.^3,4 Adults have higher rates of acquired amputation secondary to trauma and/or disease processes, with lower limb deficiency typically associated with disease process and upper limb deficiency with traumatic injuries.³ Adults with upper limb deficiency, especially females and those from certain ethnic groups, experience high rates of mental health concerns, including 50% higher rates of posttraumatic stress disorder and depression symptoms.⁴

Whereas adult limb deficiency is most often associated with acquired amputation secondary to trauma and chronic illness, the pediatric limb deficiency population has a 3:1 ratio of congenital to acquired limb deficiency. Congenital limb differences occur in 1
of every 1,943 births, with higher rates of upper limb deficiency relative to lower limb deficiency.⁵ Acquired pediatric amputations occur at an average age of 6 years and are more common in males (3:1 male to female ratio), with finger and toe amputations comprising most (93%) acquired pediatric amputations.⁶ Acquired amputations can also occur secondary to surgical conversions of a congenital limb deficiency. From a psychological perspective, higher rates of congenital relative to acquired limb deficiency may translate into lower rates of trauma sequelae and emotional and social adjustment for the pediatric limb deficiency population. However, approximately 75% of acquired pediatric limb deficiencies are secondary to trauma,^5,7 and the experience of having a limb deficiency and a visible body difference, at a minimum, presents unique challenges to patients and their families.

Just as the origin of the limb deficiency (congenital versus acquired) can result in different lived experiences, the location and severity of limb deficiency can also affect the daily lives of children in different ways. Youth with upper limb deficiency may face challenges completing tasks of daily living, differences in nonverbal communication, and in the expression of physical affection. Persons with upper limb deficiency may try to conceal their difference, and the interpersonal effect of their limb deficiency is more likely to occur within their closer and more intimate relationships. In contrast, youth with lower limb deficiency may be less able to keep up with their peers in walking and athletics, potentially limiting their participation in certain social activities. Persons with lower limb deficiency are less able to conceal their difference, resulting in greater public attention; however, lower limb deficiency has less of an effect on closer interpersonal relationships.

As noted previously, the psychological health and peer relationships of youth with limb deficiency are generally comparable with those of the normative population.⁸ Importantly, qualitative research evaluating the experiences of youth with limb deficiency across three countries (Canada, Ethiopia, and India) reveals that most youth endorse some feelings of distress surrounding their limb deficiency, with worries about how their limb deficiency may affect their future employment opportunities, feeling different from their peers, and frustrated with feeling left out of social and sports activities. Coping strategies as well as emotional and instrumental support mediated the effect of limb deficiency on youth perceptions of themselves.

Feelings of “being different” for youth with limb deficiency are aggravated by frequent encounters of unwanted attention or focus on their limb deficiency, reportedly one of the more psychologically troublesome experiences of youth with visible physical differences.⁹ Importantly, the degree to which a youth is bothered by this unwanted attention appears to moderate the effect of this attention on feelings of well-being.⁹ Specifically, youth who are able to tolerate unwanted attention without feeling emotionally activated demonstrate greater resilience and improved well-being relative to those who are very bothered by this unwanted attention. The psychological functioning of youth with limb deficiency is complex and mediated by many variables, including internal resources, modeling of responses by caregivers, access to supportive resources, and limb deficiency-specific features, such as the degree to which their limb deficiency restricts access to typical developmental experiences and rites of passage.

Health-related quality of life (HR-QOL) has emerged as an outcomes tool to assess the effect of a health condition on global and specific (eg, emotional, social, school, physical) aspects of functioning. Self-report is the gold standard of HR-QOL; however, pediatric HR-QOL inventories typically include both self-and parent-reported ratings. HR-QOL in adult amputees is affected by age and degree of functional impairment,¹⁰ adjustment to amputation and use of artificial limb,¹¹ and level of education, back pain, and phantom limb pain.¹²

As a whole, the HR-QOL of the pediatric limb deficiency population is comparable with that of the general population; however, some differences exist.^13,14 The self-and parent-reported HR-QOL of youth with unilateral upper limb deficiency are comparable with those of the healthy control population;¹⁴ however, youth with lower and/or multiple congenital limb deficiency rated their physical and social HR-QOL lower than those of the general population.¹⁶ Lower HR-QOL scores for youth with lower limb deficiency, relative to upper limb deficiency, may be attributable to the reduced participation in social and athletic activities secondary to accessibility, pain, and mobility. Importantly, when compared with other chronic health conditions, the parent report and self-report for youth with congenital limb deficiency are significantly higher than those of their peers with chronic health conditions (eg, diabetes, asthma, epilepsy), regardless of sex, age, or the type, severity, or site of the limb deficiency.⁹

Sex also appears to play a role in the HR-QOL of the pediatric limb deficiency population. Girls and young women with limb deficiency endorse greater social stigma and social concerns relative to boys and young men.¹ The site of limb deficiency and number of limb deficiencies more often affect the HR-QOL of females relative to males. Specifically, females with bilateral limb deficiency and/or lower limb limb deficiency experience less social inclusion, lower emotional health, and higher levels of physical impairment relative to males with unilateral or bilateral lower limb deficiency.⁹

In addition to sex and site/number of amputations, there is evidence that parents of youth with limb deficiency view their child’s HR-QOL in a more negative light than do the youth themselves. For example, parent ratings of school functioning for all youth with congenital limb deficiency were significantly lower than those of the general population.¹⁶ The discrepancy between parent and patient-reported HR-QOL is not unique to the limb deficiency
population. Although parents of physically healthy children typically overestimate their child’s HR-QOL, parents of youth with health conditions typically underestimate their child’s HR-QOL.¹⁷ The discrepancies between parent-proxy and youth self-report appear to be especially large in domains of emotional well-being.¹⁸

Lower parent-reported HR-QOL, relative to youth self-report, may reflect underlying parental fears or concerns about their child’s ability to perform as well as their same-age peers. In work examining the HR-QOL of youth with congenital lower limb deficiency, an age by reporter difference emerged. Specifically, parent ratings of younger children’s (8 to 11 years) HR-QOL in areas of autonomy, mood/emotions, and self-perception were significantly lower than child self-report.¹³ In contrast, parent and youth self-report for older children (12 to 18 years) did not reveal significant differences in perceptions of HR-QOL. For many parents, concerns about their child with limb deficiency are not fully assuaged until the child can demonstrate their ability to meet age-expected milestones.

The HR-QOL for youth with limb deficiency is indeed strong, both compared with their physically typical peers and when compared with youth with other chronic medical conditions. Although youth with upper limb amputations, as a whole, are comparable with youth without amputations, there is evidence that girls experience greater social stigma and concerns relative to boys.¹ Youth with lower limb deficiency appear to face greater challenges in areas of social and physical HR-QOL relative to their peers with upper limb deficiency. Of particular note are the discrepancies between self and parent ratings in areas of social, academic, and physical HR-QOL, which suggests that parents may anticipate greater struggles with HR-QOL than the children themselves experience.

Research investigating the HR-QOL of youth with limb deficiency provides both global and specific information on a variety of functions. Examining participation rates in recreational and leisure activities provides additional insight into possible reasons for lower HR-QOL. According to the World Health Organization (2001), participation in recreation and leisure activities provides another way to capture the general well-being and health status of youth and adults. Participation in structured and unstructured activities contributes to the development of physical and social skills, builds confidence, improves communication, and can serve as a buffer to adverse childhood events.^19,20

Participation in recreational, social, skill-based, physical, and self-improvement activities does not differ for youth with congenital lower limb deficiency, relative to same-age peers without limb deficiency.¹³ However, adolescents with limb deficiency had less diversity in activities and lower frequency of participation in social and skill-based activities. Future work should clarify the factors driving these lower participation rates. Other work has shown that youth with lower or multiple limb deficiency, relative to those with upper unilateral limb deficiency, have higher rates of school absences, lower participation in physical education, and higher rates of pain.¹⁶ Youth with lower limb deficiency face greater functional impairments secondary to difficulties with walking and pain, leaving them less able to participate in physical education.

Prosthesis use and availability directly affect the range and degree of participation in certain activities. Adult amputees who are able to use a prosthesis enjoy positive outcomes, including decreased phantom limb pain and improved mental health, HR-QOL, and employment.^21,22 Prosthesis use for adults is affected by several socioeconomic variables including geography, race/ethnicity, access to inpatient rehabilitation facility, and funding for prostheses with the lifetime-estimated costs of prostheses far exceeding insurance coverage.²³

In the pediatric population, prosthesis use can offer gains in functionality and social acceptance, and many parents seek out early use of a prosthesis to maximize their child’s function.²⁴ Benefits of prosthesis wear appear to vary depending on the reason or goal of wearing the prosthesis, with youth preferring prostheses designed for specific tasks relative to those for general use, which were noted to be heavy and more of a hindrance than a help.²⁵ In the United Kingdom, the importance of sports participation in the lives of children resulted in funding for sports prostheses for all youth with acquired or congenital limb deficiency who would benefit from a prosthesis to engage in sport.²⁶ Prostheses can also be a means of reducing unwanted attention.²⁴ Work examining prosthesis use for youth with transradial limb deficiency revealed cosmesis to be one of the primary reasons for wearing a prosthesis.²⁷

At the same time, the functional abilities of youth with transradial limb deficiency appear to be equivalent for prosthesis wearers relative to nonwearers. These youth also enjoyed similar or higher HR-QOL scores relative to their peers, regardless of their use of a prosthesis.² Other work has revealed possible nuanced differences between these two groups, with nonwearers being less likely to desire normal limbs and more likely to face questions from others who are more readily able to notice the limb deficiency.²⁴

As noted previously, prosthesis use in youth with limb deficiency can be more about self-perception and body image than functionality, especially for youth with upper limb deficiency. Body image is also linked to the psychological well-being of youth with limb deficiency.¹⁴ The awareness of and focus on body image, which includes a person’s attitudes and perception of their own body, peaks in the adolescent phase of development.²⁸ Body image is an important predictor of psychological functioning in adolescents, especially as
it affects peer relationships and dynamics.²⁹ Regardless of sex, lower levels of body satisfaction correlate with lower HR-QOL in adolescent amputees.⁹