Fast Forward: Adult Outcomes Associated with Pediatric Limb Deficiency

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By Phil Stevens, MEd, CPO, FAAOP
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Pediatric limb absence, regardless of its etiology or presentation, is characterized by uncertainty. Parents and patients alike are unsure about the immediate and long-term implications of that absence. While psychosocial adaptability and prosthetic acceptance and utilization constitute domains of immediate concern, there are longer-term questions about education, employment, and overall health and well-being. This article examines two recent publications that provide insight into the adult life experiences of individuals with congenital limb deficiencies and those with limb deficiencies acquired during childhood or adolescence.

Congenital Limb Deficiencies

Congenital limb reduction deficiencies are variable in their presentations. Deficits range from comparatively mild absences affecting a single limb to more involved cases with multiple limb involvement. Upper-limb deficiencies are more common than lower-limb deficiencies, with considerable variation in resultant limb lengths and presentations.

To examine the life situations of Swedish adults who grew up with congenital limb reductions, a survey instrument was developed and mailed to a cohort of 201 adults registered with the Limb Deficiency and Arm Prosthesis Centre at Örebo University Hospital.1 A 58 percent response rate yielded 117 completed questionnaires. A majority of respondents were in their 20s (n=52) and 30s (n=41), with a mean age of 33. Seventy-one percent of respondents were living with a spouse, and over half had children living at home.

While upper-limb reduction deficiencies generally outnumber lower-limb deficiencies by a ratio of two to one, there was an even greater preponderance of individuals with unilateral upper-limb deficiencies (n=108) among the respondents compared to unilateral lower-limb (n=5) and multiple limb (n=4) deficiencies. Hence, the publication largely provides information about the lives of adults with unilateral congenital upper-limb deficiencies. Within this categorization, the most common level of deficiency was reported at the forearm (n=63), followed by the hand (n=33) and upper arm (n=5).1 Transverse deficiencies were more common than longitudinal deficiencies (101 and 16, respectively), with the latter group being much more likely to require surgery related to their limb deficiencies.


Education rates among this group were high, with 50 percent having studied at the college or university level and an additional 44 percent having completed upper-secondary school education. These numbers met or exceeded Swedish national averages, which indicate that 45 percent of the general population terminates education upon completion of upper-secondary school and 38 percent receives college- or university-level education. Nearly 20 percent of the Swedish population completes elementary school education only; by contrast, 5 percent of those with congenital limb deficiencies failed to attend upper-secondary or university-level studies (Table 1).

Table 1

Among the study cohort, 60 percent of the women had attended university-level studies compared to 36 percent of the men. The percentages were almost identically reversed for those who did not pursue education beyond upper-secondary school. About three-quarters of the study subjects in their 30s had attended college compared to one-third of those in their 20s. This suggests that college attendance figures for the second group might be artificially low as some of these individuals may yet attend college but simply hadn't begun those studies. Taken collectively, the data suggests that adults with congenital limb absence have higher college and university attendance than the general public.


Twelve subjects (10 percent), most of whom were in their 20s, reported full-time studies as their main daily occupation. Among the remaining subjects, 77 percent reported being employed full time. With 2 percent retired and 3 percent on sick leave, only 7 percent of the study subjects were unemployed. Thus the unemployment rate reported by adults with congenital limb absence is consistent with that of the general Swedish population.

Among the employed respondents, 82 percent reported being permanently employed, with 11 percent declaring temporary employment and 8 percent reporting owning their own businesses. Full-time employment was reported by 80 percent of the employed subjects. Men were employed predominantly in the private sector (64 percent) and women overwhelmingly employed in the public sector (88 percent).

All subjects were asked whether they would assess their work capacity as reduced; three-quarters said no. Of the remaining quarter, 22 percent assessed their work capacity as partially reduced. This optimistic outlook may reflect the type of work these adults were engaged in. With regard to the physical demands of their employment, 45 percent described their jobs as "sedentary" (sitting most of the time). An additional 22 percent described their jobs as "light with some mobility" (mobile but not carrying heavy things), and 27 percent described their jobs as "moderately heavy work" (walking a lot and carrying heavy things). Only 6 percent said they were engaged in "heavy work" (physically demanding with significant strain on the body). This data suggests that adults with congenital limb reductions sought employment with physical requirements that largely matched their own physical capacities.

Leisure and Health

Generally, the survey respondents were socially and physically active. Most reported having regular associations with friends and relatives and exercising at least 30 minutes per week. Roughly half reported regular participation in group activities, such as religious communities and community associations. The respondents overwhelmingly reported their general health as "good" (57 percent) or "very good" (41 percent), and 88 percent were optimistic about their personal futures.

In aggregate, these individuals reported an active, healthy adult lifestyle with above-average education and sound employment consistent with their physical abilities. Such data may be particularly comforting to the parents of children and infants with congenital limb reductions who may carry understandable insecurities regarding the future health and well-being of their children.

Pediatric-Acquired Amputations

In cases of congenital limb deficiencies, individuals experience the entirety of their childhoods and adolescent years with their limb absences, with no marked period of transition to an altered body type. They contend with the absences from birth, with sustained adaptation throughout their early lives. Such is not the case when limb loss occurs later in youth due to trauma or cancer. Large cohort outcomes of adults with acquired traumatic pediatric amputations have not been performed. However, a large cohort of pediatric cancer survivors has been tracked by the Childhood Cancer Survivor Study (CCSS).2 A review of this data set suggests that the adult life experience for this population is somewhat different from those with congenital limb reduction deficiencies.

Unlike the Swedish study where comparisons were drawn against national statistics, the study of more than 1,000 pediatric cancer survivors compares outcomes between those whose cases were managed with amputations and those managed with limb-salvage surgeries. This strategy appears to best isolate the effects of the amputations specifically, while taking into account the reality that childhood will be affected by the often drawn-out treatment courses associated with pediatric cancers, irrespective of an amputation event. In doing so, the study reports on patients who were diagnosed before the age of 21 with either bone or soft tissue sarcoma located in the upper or lower limb and who were treated at one of the 26 participating study institutions in the United States.

Demographic data were reported for the entire cohort with no delineation of differences observed in those who required amputations during their courses of care. The ages at cancer diagnoses varied, but were more common at progressively older ages. Incidences of diagnoses were comparatively low between ages zero through four (9 percent) and five through nine (16 percent), and higher between ten through 14 (34 percent) and 15 through 20 (44 percent). Participant ages at the time of their baseline surveys were largely between 20 and 39 (87 percent), increasing to 30 through 49 at the time of the follow-up surveys. At the time of the baseline surveys, survival times were greater than ten years for over 90 percent of the respondents.

Lower-limb cancers (n=820) were more common than cancers in the upper limbs (n=274). Amputations were performed in over half of all subjects with lower-limb cancers (transfemoral amputations, 46 percent; transtibial amputations, 5 percent), with limb-sparing surgeries performed in an additional 17 percent and no surgeries required in the remaining 32 percent. In contrast, among those with upper-limb cancers, amputation was only required 14 percent of the time, with an additional 28 percent requiring limb-sparing surgeries and the majority (57 percent) managed nonsurgically.

Functional Impairment and Activity Limitation

Functional impairment was defined as being present when subjects responded positively to any of three survey questions that asked if their current impairments resulted in:

  • Needing help with personal care
  • Needing help with household chores
  • Difficulty attending work or school

Given this fairly low threshold, it is encouraging to observe that functional impairments were only observed in about one-quarter of those subjects who experienced amputations, with similar rates observed among those at the transfemoral (23.6 percent), transtibial (24.1 percent), and upper-limb (25.3 percent) amputation levels. However, such impairments were even less common among those who were managed nonsurgically (15 percent) and with limb-sparing surgeries (13 percent).

Activity limitation was similarly defined as being present when subjects responded positively to any of three survey questions that asked if, over the last two years, they were limited in activity for more than three months in:

  • Kinds or amounts of moderate activity (moving a table, carrying groceries)
  • Walking or climbing a few flights of stairs
  • Walking one block

Again, given the fairly low threshold, activity limitation was encouragingly uncommon among all subjects. The highest rates were observed among those with transfemoral amputations (30 percent), a surprisingly low figure given the studyfs definition of limitation. Rates of activity limitation among the other cohorts were 19 percent among subjects with transtibial amputations, 12 percent among those with upper-limb amputations, 16 percent among those who underwent limb-sparing surgeries, and 19 percent among those managed nonsurgically.

College, Employment, and Income

In contrast to the relatively encouraging data on functionality and activity, the data on college, employment, and income is concerning. Individuals who experienced an upper-limb amputation in their youth due to cancer were 1.8 times more likely not to graduate from college than their peers whose cancers were managed nonsurgically. This trend was modestly reduced among those with lower-limb amputations, with relative risks of 1.46 and 1.36 reported with transtibial and transfemoral amputations, respectively. Viewed another way, 62 percent of those youth who required upper-limb amputations did not graduate from college compared to 47 percent of those with transtibial amputations, 46 percent of those with transfemoral amputations, 43 percent of those who experienced limb-salvage surgeries, and 37 percent of those whose cancers were managed nonsurgically (Table 2).

Table 2

The relationship between college graduation and employment is seen in unemployment data, where the highest incidence of unemployment was observed among those with upper-limb amputations (20 percent), followed by those with transfemoral (16 percent) and transtibial (14 percent) amputations. By comparison, unemployment was reported by only 9 percent of those managed with limb-sparing surgeries and 10 percent of those managed nonsurgically. Similar trends were observed with respect to income, where a reported income of less than $20,000 per year was most likely to be found among those with transfemoral (37 percent) and upper-limb (35 percent) amputations. These were followed by those with transtibial amputations (31 percent), nonsurgical management (27 percent), and those with limb-sparing surgeries (25 percent).


Viewed collectively, the observations of these two studies are encouraging. They suggest that children with congenital limb deficiencies tend to experience positive adult life situations with elevated rates of college attendance, no elevated rates of unemployment, and general optimism with regard to their future health and well-being. By contrast, the adult life situations of individuals with childhood cancers requiring amputations is less encouraging. The good news is that, even with fairly low thresholds, functional impairments and limited activities are less common. However, trends regarding college completion, unemployment, and income suggest that adults who required amputations due to cancer during childhood are more challenged than their peers who were managed either nonsurgically or with limb-sparing surgeries. Specifically, the contrast between college completion rates among those with congenital upper-limb deficiencies and those who acquired upper-limb amputations during childhood and adolescence suggest that the timing of a limb absence greatly impacts the person's later life events.

Phil Stevens, MEd, CPO, FAAOP, is in clinical practice with Hanger Clinic, Salt Lake City. He can be reached at .


  1. Sjöberg, L., Y. Nilsagård, and C. Fredriksson. 2014. Life situation of adults with congenital limb reduction deficiency in Sweden. Disability and Rehabilitation 36 (18):1562-71.
  2. Marina, N., M. M. Hudson, and K. E. Jones, et al. 2013. Changes in health status among aging survivors of pediatric upper and lower extremity sarcoma: A report from the childhood cancer survivor study (CCSS). Archives of Physical Medicine and Rehabilitation 94 (6):1062-73.