Pediatric Patients with Postburn Amputations Report Worse Long-term Physical Function but Not Self-Appearance: A Burn Model System Study

Abstract

Some severe burn injuries may warrant amputation; however, the physical and functional adjustments resulting from postburn amputation can have long-term consequences. This study investigates longitudinal functional and psychosocial outcomes among pediatric burn amputees. Pediatric participants enrolled in the Burn Model System national longitudinal, multicenter database between 2015 and 2023 with postburn amputations were included. Participants with amputations were matched using nearest-neighbor matching to those without amputations based on burn location, age, and % total burn surface area burn size. Primary outcomes were the Patient-Reported Outcomes Measurement Information System Pediatric-25 Profile v2.0 Physical Function and the Children Burn Outcomes Questionnaire: appearance subscore, both measured at 6-, 12-, and 24 months postburn. In this study, 17 participants had amputations, and 17 did not (matched participants). Pairwise analyses at each timepoint found those with amputations reported significantly lower physical function scores at 24 months postburn (54.9 ± 11.6 vs 66 ± 5, P = .013). No significant differences were found in appearance scores. This study suggests that pediatric burn amputees may potentially face greater physical impairment long-term, highlighting an important area of research that deserves further attention.

INTRODUCTION

In the United States, burn injuries represent the fourth leading cause of trauma-related mortality in the pediatric population, with scald burns commonly impacting younger children and flame burns frequently seen among adolescents.^1,2 Depending on the severity, some burn injuries may warrant amputation.³ However, amputations necessitate longer hospital stays and may require additional rehabilitative and prosthetic services.^3,4

Amputations following burn injury can also have long-term psychological and functional repercussions. As burn patients who have undergone amputation often require adjustment to disfigurement and physical disability, this may result in increased feelings of despair, anxiety, social stigma, and avoidance.^5,6 A prior study utilizing the Burn Model System (BMS) National Database, a federally funded, multicenter research database, reported that postburn amputation among adults was negatively correlated with mental health scores.⁷

Among younger children, amputation can drastically interfere with a child’s ability to walk, play, and explore their surroundings—which are crucial to their development. Furthermore, the perceived importance placed on body image is heightened during teenage years, and amputation can cause significant visible disfigurement among adolescent amputees, intensifying their fear of stigma from peers.⁸ However, because postburn amputations can drastically reduce mortality rates among patients with severe or highly complicated burn injuries,^3,9 there is a need to better understand the functional and psychosocial implications associated with this procedure, especially among pediatric burn survivors.

This study utilizes the BMS database to investigate the longitudinal effects of postburn amputation on psychosocial and functional outcomes among pediatric burn survivors. The data presented in this study are obtained from the Burn Model System National Database, which is a prospective, longitudinal, multicenter database that is funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). The BMS database, which comprises 4 burn centers per cycle and contains information from approximately 6000 burn survivors, was established in 1994 with the aim of better understanding the psychosocial and functional outcomes among adult burn populations. Pediatric burn survivors were added in 1997 during the second cycle of BMS funding. Information is collected from burn survivor participants at the time of hospital discharge, 6, 12, and 24 months, and every 5 years postburn injury by individual BMS burn centers. The BMS National Data and Statistical Center manages and routinely quality-checks this data.

The objective of this study is to elucidate the unique challenges to recovery that pediatric postburn amputees experience long-term, more specifically to investigate if pediatric burn survivors demonstrate significantly worse long-term physical function and self-appearance compared to their nonamputee counterparts.

METHODS

Database and study design

This study, which obtained Institutional Review Board approval from each participating BMS center, investigates BMS pediatric burn participants (under the age of 18) who sustained burn injuries after 2014 and had at least one outcomes measure reported. BMS inclusion criteria for burn participants comprise of the following: (1) participant was treated at one of the BMS centers for their burn injury, (2) participant and guardian/parent provided informed assent (based on age) and consent to inclusion, and (3) participant met burn inclusion criteria comprising of one of the following: (1) 0-17 years of age, ≥20% TBSA burn injury; (2) high-voltage electrical/lightning burn injury; (3) and/or face, hands, genitals, and/or feet burn injuries; and surgery to heal burn wound. Exclusion criteria for this study included participants who were nonconsentable, participants who were not listed as alive at hospital discharge, adult participants (ages 18 years and older), and participants without postburn amputation data. Any modifications to inclusion and exclusion criteria as well as further information about the BMS National Database can be found at the official BMS website (http://burndata.washington.edu/).

Demographic and burn injury characteristics

Participant demographic variables included age at time of injury, sex, race, and ethnicity. Burn injury characteristics included burn etiology (fire/flame, scald, contact with hot object, grease, electricity, and flash burn), % TBSA burn size, burn injury location (head, trunk, perineum, arm, and leg), and postburn amputation status and location. The average number of trips to the operating room as well as the number of participants who received occupational therapy (OT) and physical therapy (PT) within 6 months postburn were analyzed for the amputation group and the matched nonamputation group.

Patient-reported outcomes measures

Patient-Reported Outcomes Measurement Information System Pediatric-25 Profile v2.0

The Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric-25 Profile v2.0 is a questionnaire consisting of six 4-item forms measuring 6 domains (anxiety, depressive symptoms, fatigue, pain interference, peer relationships, and physical function mobility), on which participants are asked to rate on a Likert scale from 0 to 5. In addition, one final question asks participants to rate pain intensity on a Likert scale from zero to 10. Higher scores indicate greater intensity for the domain being measured. In this study, scores from the Physical Function domain were obtained from pediatric participants at 3 timepoints (6, 12, and 24 months postburn).

Children Burn Outcomes Questionnaire

The Children Burn Outcomes Questionnaire, formally known as the Burn Outcomes Questionnaire for ages 11-18 (BOQ_11-18), is a self-administered survey developed by the American Burn Association in collaboration with researchers at Shriners Hospitals for Children. This questionnaire aims to measure physical, social, and psychological outcomes among pediatric burn patients over time. The BOQ_11-18 is a reliable, validated metric assessing various domains that consist of items on which participants are asked to rate on a 5-point Likert scale. In this study, data from the appearance subscore of the BOQ_11-18 were obtained from pediatric participants at 3 timepoints (6, 12, and 24 months postburn). The appearance subscore assesses feelings of being unattractive and discomfort in social interactions and ranges from a minimum value of 5 to a maximum value of 20, with lower values corresponding to a greater feeling of unattractiveness and discomfort.

Statistical data analysis

Pediatric burn participants with amputations were matched at a one-to-one ratio to participants without amputations. Exact matching was done on burn location, and nearest-neighbor matching was simultaneously used for age and % TBSA burn size.

Descriptive statistics were used to characterize demographic and burn injury characteristics on both the unmatched (Table 1) and matched samples (Table 2). Pairwise comparisons were used to examine differences in descriptive data among those with an amputation and the matched sample without an amputation. A 2-sided significance level of 0.05 was used to determine the statistical significance of any test.

RESULTS

Demographic and burn injury characteristics

In our matched sample of 17 pediatric participants with postburn amputations and 17 without, the average age of the amputation group was 12.5 years (SD = 3.1, range: 8-17) and was 13.1 (SD = 2.8, range: 9-17) for the group without amputation, with no significant differences between groups (Table 2). In the amputation group, 64.7% of participants were male with 17.6% White, 35.3% “Other” race, and 47.1% of “Unknown” race. In the group without amputation, 70.6% were male with 47.1% White, 5.9% African-American/Black, 35.3% “Other” race, and 11.8% of “Unknown” race. Regarding ethnicity, among those with an amputation, 82.4% were of Hispanic, Latino, or Spanish origin, and 11.8% were not, with 5.9% of “Unknown” ethnicity. Among those without an amputation, 47.1% were of Hispanic, Latino, or Spanish origin, and 52.9% were not.

Regarding burn injury characteristics, 41.2% of amputated participants had upper amputation only, 5.9% had lower amputation only, 11.8% had both upper and lower amputation, and 41.2% were unknown. The average % TBSA burn size of the amputation group was 44.1% (44.9% among those without an amputation) with 52.9% of burns due to electricity and 47.1% due to fire/flame compared to 11.8% electricity and 70.6% fire/flame among participants without an amputation. The average number of trips to the operating room was 6.4 (SD = 3.8) for the amputation group (4.1 [SD = 4.1] for the nonamputation group). Among amputated participants, 11.8% had received OT within 6 months postburn (11.8% among nonamputated participants), and 5.9% had received PT within 6 months postburn (23.5% among nonamputated participants).

See Table 1 for descriptive data of the unmatched samples and Table 2 for descriptive data of the matched samples.

Physical function scores

Pairwise analyses at each timepoint found that participants with amputations reported significantly lower physical function scores at 24 months postburn (amputation group: M = 54.9, SD = 11.6; nonamputation group: M = 66, SD = 5, P = .013) (Table 3). However, there were no significant differences between groups in physical function scores at 6 months (amputation group: M = 50.2, SD = 15.3; nonamputation group: M = 59.1, SD = 8.9, P = .094) and 12 months postburn (amputation group: M = 53.2, SD = 12.4; nonamputation group: M = 61.3, SD = 10.7, P = .081).

Appearance scores

No significant differences were found in appearance scores at each postburn timepoint (Table 4).

DISCUSSION

Postburn amputations may sometimes be necessary among patients with burns having very severe or highly complicated burn injuries.^3,10 However, because amputation results in the permanent reshaping of an extremity, it can be challenging for patients with amputations both physically and psychologically as they try to adjust to alterations in physical appearance and modifications to functional mobility. As there is a dearth of literature regarding postburn amputations, partially because these procedures are relatively rare with an incidence rate of 2%, it is unknown how postburn amputations affect pediatric burn survivors long-term.³ To better understand the effects of postburn amputation on longitudinal physical and psychosocial outcomes, this multicenter study compares physical function and appearance scores between pediatric burn patients with and without amputations.

In this study, pediatric burn survivors with amputations reported greater physical impairment compared to their nonamputated peers, as demonstrated by significantly worse physical function scores. These findings differ from a prior BMS study by Carrougher et al., which reported that postburn amputation among adults was a significant predictor of higher physical function scores at 6 months postburn.⁷ However, this same study also reported that adults with postburn amputations were less likely to be employed at 1 year postburn, which may be an indicator of decreased physical capacity among this patient group.

Interestingly, the current study also reported that pediatric patients with postburn amputations fared as well in appearance scores as their nonamputated peers, indicating no differences in that psychosocial domain. This finding also differs from Carrougher et al., as those investigators reported that postburn amputation among adults was negatively correlated with mental health scores.⁷ The incongruence between these 2 psychological outcomes observations may be partially explained by fundamental differences between the age groups of the 2 study populations.

More specifically, pediatric burn patients may be able to better psychosocially adjust to injury-related alterations in appearance compared to adult burn patients. Studies have demonstrated that although female adolescent burn patients are more likely to express negative body image, in general, adolescent burn patients report higher quality of life levels and express more positive evaluations of their body and of how others perceive their appearance compared to control subjects.¹¹ Furthermore, other studies have shown that younger patients appear to better adapt to facial disfigurement, especially if these changes occurred before or during puberty, while adults who experience facial disfigurement later in life appear to suffer the greatest.¹² Therefore, pediatric burn patients may demonstrate greater psychological resiliency to postamputation alterations in physical appearance compared to adults, explaining the incongruencies with prior adult postburn amputation studies.

Overall, as pediatric patients with postburn amputations were found to demonstrate poorer physical function long-term, these findings emphasize an area of research that deserves further attention. It may be worthwhile examining the efficacy of current recommendations for PT and OT as well as other amputee-specific rehabilitative interventions, amputee peer support, and school reentry programs available to pediatric burn amputees. Doing so will be the first step toward identifying key areas for improvement in both in-hospitalization and postdischarge care for these burn survivors.

There are limitations that need to be acknowledged. As the data analyzed were obtained from 5 burn centers participating in the BMS National Database, the data presented are not representative of a national sample. Many of the pediatric participants in this database are from Mexico and have worse burn injuries compared to the general US population. Differences in race and ethnicity were still present after matching and may confound the results; however, the limited sample size prevented them from matching these characteristics. Furthermore, even after matching for burn location, age, and % TBSA burn size, a notable difference in burn etiology was present between groups, as an insufficient number of participants without amputation had an electrical burn, making improvements from matching impossible. Lastly, as outcomes data were primarily obtained through self-reported surveys over the period after discharge, it is subject to both recall and response bias.

In addition to the suggestions discussed above, future research could investigate the different coping strategies employed by pediatric burn amputees that may be contributing to their psychological resilience and adaptability to changes in physical appearance. In addition, although not feasible in this study due to the limited sample size, future endeavors should investigate differences in both physical and psychosocial outcomes between different pediatric age subgroups (young child vs adolescent) and between pediatric burn amputees with different amputation locations. More specifically, participants undergoing amputation during adolescence may report worse self-appearance long-term compared to infants or toddlers, who are able to better integrate any changes to appearance into their developing sense of self-image.¹³

CONCLUSION

This multicenter, longitudinal analysis revealed that pediatric burn survivors with postburn amputations reported significantly lower physical function scores compared to their nonamputation peers at 24 months postburn. However, no significant difference between groups was observed for appearance scores. These findings suggest that pediatric burn amputees may face greater physical impairment in the long term. This study highlights an important topic in need of further research, which may ultimately lead to improvements in practices of care allowing for the optimization of both physical and psychosocial recovery among pediatric burn amputees.

Author Contributions

Deborah Choe (Investigation, Methodology, Writing—original draft, Writing—review & editing [lead]), Andrew Humbert (Formal analysis [lead], Investigation [supporting], Methodology, Writing—review & editing [equal]), Erin Wolfe (Writing—review & editing [supporting]), Sarah Stoycos (Writing—review & editing [supporting]), Samuel Mandell (Writing—review & editing [supporting]), Barclay Stewart (Writing—review & editing [supporting]), Gretchen Carrougher (Writing—review & editing [supporting]), Karen Kowalske (Writing—review & editing [supporting]), Jeffrey Schneider (Writing—review & editing [supporting]), David Crandell (Writing—review & editing [supporting]), and Haig Yenikomshian (Conceptualization, Funding acquisition, Investigation [lead], Methodology [supporting], Project administration, Resources, Supervision [lead], Writing—review & editing [equal])

Funding

The contents of this manuscript were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant numbers 90DPGE0004, 90DPBU0005, 90DPBU0007, and 90DPBU0008). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this abstract do not necessarily represent the policy of NIDILRR, ACL, or HHS, and you should not assume endorsement by the Federal Government.

Conflict of Interest Statement

None declared.

REFERENCES