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caregivers
a rt i cl e in fo ab strac t
Article history: Objectives: The purpose of this study was to evaluate pediatric burn patients’ and care
Accepted 24 January 2023 givers’ quality of life (QoL), while identifying clinical characteristics correlated with psy
chological stress.
Keywords: Methods: Pediatric burn patients at an ABA-verified institution from November 2019-
Pediatrics January 2021 were included. Caregivers of patients 0–4 years completed the Infant’s
Child Dermatology QoL Index (IDQOL). Patients > 4–16 years completed the Children’s
Burns Dermatology Life Quality Index (CDLQI). The Short Post-Traumatic Stress Disorder Rating
Psychology Interview (SPRINT) measured caregivers’ stress. Generalized linear mixed models eval
Wounds and injuries uated associations between assessment scores and burn characteristics.
Results: Overall, 27.3% (39/143) of IDQOL and 53.1.% (41/96) of CDLQI scores indicated that
patients’ burns caused moderate to extremely large effects on QoL. In caregivers, 4.5% (7/
159) scored > 14 on the SPRINT, warranting further PTSD evaluation. For the IDQOL, each
additional 1% TBSA burn was associated with a 2.75-point increase (p = 0.05), and patients
sustaining 2nd degree deep partial thickness burns scored an average of 3.3 points higher
Abbreviations: QoL, quality of life; ABA, American Burn Association; PIQIC, Pediatric Injury Quality Improvement Collaborative; IDQOL,
Infant’s Dermatology Quality of Life Index; CDLQI, Children’s Dermatology Life Quality Index; SPRINT, Short Post-Traumatic Stress
Disorder Rating Interview; TBSA, total body surface area; LOS, length of stay; IQR, interquartile range; SD, standard deviation
⁎
Correspondence to: Nationwide Children’s Hospital, Department of Pediatric Surgery, 700 Children’s Drive, Columbus, OH
43205–2664, USA.
E-mail address: rajan.thakkar@nationwidechildrens.org (R.K. Thakkar).
https://doi.org/10.1016/j.burns.2023.01.010
0305-4179/© 2023 Elsevier Ltd and ISBI. All rights reserved.
1312 burns 49 (2023) 1311–1320
compared to 2nd degree superficial partial thickness burns (P < 0.01). CLDQI and SPRINT
scores demonstrated a similar pattern.
Conclusions: QoL is impacted in a substantial proportion of pediatric burn patients. Larger
TBSA and increased burn depths cause significantly more psychological stress in children,
and caregivers may require more extensive psychological evaluation.
© 2023 Elsevier Ltd and ISBI. All rights reserved.
Fig. 1 – Schematic diagram of patient selection and their caregiver’s assessment completion (IDQOL - Infant’s Dermatology
QoL Index; CDLQI - Children’s Dermatology Life Quality Index; SPRINT - Short Post-Traumatic Stress Disorder Rating
Interview), IDQOL: Infant’s Dermatology Quality of Life Index; CDLQI: Children’s Dermatology Life Quality Index; SPRINT: Short Post-
Traumatic Stress Disorder Rating Interview.
been used to assess pediatric burn patients 0 to < 4 years of function. Therefore, caregivers of pediatric burn patients who
age [4,5]. In our study, caregivers of pediatric burn patients 0 were > 18 years old completed the SPRINT screening to
to < 4 years old completed the IDQOL. The IDQOL is com evaluate their stress response. The SPRINT screen is an 8
prised of 10 questions related to symptoms and difficulties question self-assessment, which also uses the Likert scale,
with mood, dressing, bathing, mealtimes, play, family activ with a maximum of 4 points for each question and a max
ities, sleep, and treatments. Each question is scored on a imum total score of 32. SPRINT scores were assessed as
Likert scale with a maximum of 3 points per question, continuous, with a score > 14 indicating the need for further
making the minimum score 0 and the maximum score 30. A structured psychological evaluation for PTSD, as suggested
higher score indicates more QoL impairment [9]. In our study, by the validating authors [10].
IDQOL scoring was also categorized similarly to the CDLQI:
0–1 = no effect on the child’s QoL, 2–6 = small effect, 4.1. Statistical analyses
7–12 = moderate effect, 13–18 = very large effect, and
19–30 = extremely large effect. Patients’ demographic and burn characteristics were sum
marized and reported as medians and interquartile range
(IQR) for continuous variables and as frequencies and per
4. Short post-traumatic stress disorder rating centages for categorical variables (dichotomous or nominal).
interview Body region variables were grouped into four categories: 1)
head and neck; 2) chest, abdomen and back; 3) extremities;
The Short Post-Traumatic Stress Disorder Rating Interview and 4) multiple regions. The mean, standard deviation (SD),
(SPRINT) is a tool which was developed by Connor & minimum, and maximum scores for each variable within the
Davidson in 2001 for use in adults > 18 years old as a less CDLQI and IDQOL were also reported. Patients’ overall QoL
time-consuming, but structured post-traumatic stress dis assessment (IDQOL, CDLQI) scores were categorized as no
order (PTSD)-specific measure [10,11]. In studies, it was effect (score: 0–1); small effect (score: 2 – 6); moderate effect
shown to have good test-retest reliability, consistency, and (score: 7 – 12); very large effect (score: 13 – 18); and extremely
convergent and divergent validity. Its questions evaluate so large effect (score: 19 – 30) for potential aggregation.
matic distress, stress vulnerability, and impairment in Caregiver assessments (SPRINT) scores were categorized as
1314 burns 49 (2023) 1311–1320
not needing further structured psychological evaluation for Overall, 27.3% of caregivers completed IDQOL assessments
PTSD (score: 0–14) and needing further structured pyscholo which indicated that their child’s skin condition caused a
gical evaluation for PTSD (score: > 14). moderate to extremely large effect on their QoL. A higher
Generalized linear mixed models (GLMM), with negative proportion of children who completed the CDLQI assessment
binomial distribution, were fitted to separate models to (53.1%) indicated that their skin condition caused a moderate
evaluate whether IDQOL, CDLQI and SPRINT scores were to extremely large effect on their QoL. When evaluating care
associated with demographic and clinical burn character givers’ psychological burden, 4.5% completed a SPRINT as
istics. Univariate analyses of individual variables were sessment with a score > 14, which warranted the need for
completed to evaluate their association with IDQOL, CDLQI further structured psychological evaluation for PTSD due to
and SPRINT scores separately using a chi-square test for their child’s burn (Fig. 2). The mean QOL score was also found
categorical variables and a Mann-Whitney U test for con to be higher in CDLQI assessments compared to IDQOL as
tinuous variables, based on their distributions. All relevant sessments by 2.9 (95% CI 1.6–4.0) (p < 0.01) (Table1). Associa
covariates with a P value < 0.2 were entered into the multi tions between individual covariates and their corresponding
variable regression using GLMM. However, the number of QoL scores (IDQOL, CDLQI, SPRINT) are presented in Table 2.
days elapsed between injury and assessment date was When evaluating responses to the CDLQI, the variable
considered in all three of the multivariable models irre with the highest score was, “Over the last week, how much
spective of its significance level to account for potential have you avoided swimming or other sports because of your
confounding effects of time elapsed from the date of injury. skin trouble?” (1.49, SD: + 1.32, minimum: 0, maximum: 3).
Categorical factors which were identified to be associated This was followed by, “Over the last week, how itchy,
with QoL scores are presented with mean values (95% CI). “scratchy,” sore, or painful has your skin been?” (1.45, SD: +
Model validation criteria and residual diagnostic plots were 0.98, minimum: 0, maximum: 3). The variable with the lowest
used to test model fit. Analyses were performed using SAS score was, “Over the last week, how much has your skin af
Enterprise guide 8.1 (SAS institute Inc., NC, USA). A subset fected your friendships?” (0.10, SD: + 0.36, minimum: 0,
analysis was also performed using a similar set of models fit maximum: 2). When evaluating parent/caregiver responses
for patients who were admitted to the hospital while ad to the IDQOL, the variables with the highest scores were,
justing for length of stay (LOS). “Over the last week, how much has your child having skin
issues been a problem at bath-time?” (0.81, SD: + 1.08,
minimum: 0, maximum: 3) and “Over the last week, has your
5. Results child’s skin issues meant that dressing and undressing the
child has been uncomfortable?” (0.70, SD: + 0.89, minimum: 0,
Our cohort consisted of 272 burn patients; however, 28 pa maximum: 3). The variable with the lowest score was “Over
tients were excluded based on exclusion criteria. A total of the last week, have there been problems with your child
244 patients were included, with a 143/143 (100%) assessment caused by the treatment?” (0.19, SD: + 0.46, minimum: 0,
completion rate for the IDQOL (0 to < 4 years old), a 96/101 maximum: 2). For each of these particular variables: 0 = not
(95.1%) response rate for the CDLQI (≥4–16 years old), and a at all, 1 = only a little, 2 = quite a lot, and 3 = very much.
65.2% (159/244) response rate for the SPRINT completed by Notably, some IDQOL response choices vary based on the
caregivers (> 18 years old) of all patients (Fig. 1). variable (Supplementary Table 1).
The mean age of pediatric burn patients in our cohort When adjusting for the time elapsed between injury date
was 5.3 years (SD: + 4.8), and a majority of patients were and survey completion date, the multivariable regression
male (56.1%), non-Hispanic (97.5%), and White (67.2%). model suggests that on average, each additional 1% of TBSA
Payment was most often through Medicaid insurance burn is associated with an increase of 2.75 points on the
(51.6%). Most patients sustained a single site burn (78.3%), a IDQOL assessment (p = 0.05). Similarly, each 1-day elapsed
burn to the extremities (hand, arm, foot, leg – 67.6%), and a from the date of injury is associated with a decrease of 3.53
2nd degree superficial partial thickness (65.9%) burn depth. points on the IDQOL assessment (p = 0.01). QoL scores would
Scald burns were most common (44.3%). The mean total also be higher by 3.3 points for patients sustaining 2nd degree
body surface area (TBSA) burn at initial presentation was deep partial thickness burns (2D) compared to those sus
2.7% (SD: + 4.8) but ranged from 0.5% to 41%. The mean taining a 2nd degree superficial partial thickness burn (2 S)
number of days from injury to survey completion was 9.1 burn (P < 0.01); however, this was not demonstrated in those
days (SD: + 7.0). Patients responding to the CDLQI were a who sustained 3rd degree burns (Fig. 3). The mean and 95% CI
mean age of 10.4 years old (SD: + 3.4), while children whose score estimate for each category per variable is shown in
caregivers responded to the IDQOL were a mean age of 1.9 Table 3.
years old (SD: + 1.3). Most children whose caregivers com On the CDLQI, each additional 1% of TBSA burn is sig
pleted the IDQOL were male (62.9%), while most children nificantly associated with an increase of 2.05 points (P = 0.04).
completing the CDLQI were female (55.2%; p < 0.01). For Though days elapsed from injury date to survey date was not
IDQOL, CDLQI, and SPRINT assessments, a majority of pa significantly associated with the CDLQI score (P = 0.12), an
tients sustained scald burns and burns to the extremities increase in elapsed days still tended to decrease the CDLQI
(p < 0.01). Most patients responding to CDLQI were ad score (Table 4). The SPRINT assessment had a suggested as
mitted to the hospital for their burn (84.5%), whereas pa sociation with TBSA burn, with each additional 1% being as
tients with an IDQOL completed mostly underwent no sociated with an increase of 3.38 points (P = 0.05). SPRINT
hospital admission (78.3%; p < 0.01) (Table 1). scores are also suggestively higher by 2.48 points for patients
burns 49 (2023) 1311–1320 1315
old, as well as the need for further PTSD assessment in their compared to healthy peers, they demonstrated significantly
caregivers. According to caregiver responses, just over one- lower QoL and increased behavioral difficulties, though no
quarter of children 0 to < 4 years old and over half of children differences in self-concept were noted [3]. More recently,
≥ 4–16 years old experienced a moderate to extremely large Stewart et al. (2019) also used the caregiver completed
effect on their QoL due to their skin condition after sustaining IDQOL, but to describe the effect of pruritis on pediatric burn
a burn injury. Though a smaller number of caregivers met the patients with smaller burns (mean TBSA burn = 4%). Forty-
threshold for needing further structured psychological eva seven percent of their cohort of children 0–4 years old were
luation for PTSD after their child sustained a burn injury affected by pruritis following burn injury, with child min
(4.5%, SPRINT score > 14), the number is not clinically insig ority race, increased TBSA burn, and more days elapsed
nificant, and the mental health of caregivers is important to since burn injury predicting more severe pruritis. They also
address when treating pediatric burn patients. found positive correlations between pruritis and irritability
Numerous studies have examined psychological burdens and sleep disturbances [5]. Our study demonstrated similar
and QoL in children with burns, but few have investigated results, with one-third to over half of our patients experi
the clinical characteristics most associated with these out encing moderate to extremely large effects on QoL after
comes [6]. Conflicting findings have also been reported. A their burn. Older children were also more affected by the
study done by Stoddard et al. (1989), compared psychiatric size of their burn, and younger children were more affected
outcomes between pediatric burn patients and a nonburn by both burn size and burn depth. Although not assessed in
patient sample and found that the children sustaining burns our study, Oh et al. (2017) found that scar characteristics
had higher levels of anxious disorders, phobias, depressive were more likely to determine QoL after a burn injury than
symptoms, and PTSD [15]. Maskell et al. studied QoL, psy burn severity, which suggests that longer-term follow up of
chological adjustment, and self-concept in pediatric burn these patients’ scarring and contracture development is
patients 8–17 years old with burn scarring and found that, important [16].
burns 49 (2023) 1311–1320 1317
Fig. 3 – Relationship between total body surface area burn and highest degree burn sustained and quality of life scores (data
points generated from multivariable regressions), 2 S = 2nd degree superficial partial thickness; 2D = 2nd degree deep partial
thickness; 3 = 3rd degree, IDQOL: Infant’s Dermatology Quality of Life Index; CDLQI: Children’s Dermatology Life Quality Index.
Contrastingly, studies done by Pope et al. (2007) and refuted these results, authors cautiously suggested that burn
Lawrence et al. (2007) showed that adolescent burn survivors patients may cope better than previously thought, despite
reported higher body image satisfaction and QoL compared the physical and psychosocial consequences of burn injuries
to age-matched control groups. Though previous findings [3,17,18]. Of note, these two studies focused only on
Table 5 – Multivariate model for Short Post-Traumatic Stress Disorder Rating Interview.
Variable Level Estimate SE P-value Mean SPRINT score (95% CI)
Total TBSA at initial presentation 3.38 1.71 0.05
Days from injury date to survey date -2.10 1.43 0.15
Burn depth 2S 3.4 (2.7,4.2)
2D 0.84 1.20 0.49 4.0 (2.6,6.1
3 2.48 1.27 0.05 6.9 (3.6, 13.7)
SPRINT: Short Post-Traumatic Stress Disorder Rating Interview
adolescent populations, which highlights the consideration injury. Furthermore, parent coping has been shown to di
that different age groups may be burdened by psychosocial rectly affect adjustment capabilities in children [22,23,27,28].
disturbances in different ways and/or have varying age-re Fukunishi studied 16 pairs of mothers and children with
lated capabilities to cope with these burdens. Le Doux et al. scald injuries and found that 6.3% and 0% of children ex
found that children sustaining burns reported significantly perienced PTSD and major depression, respectively. How
higher self-esteem and self-concept than the control sample. ever, their mothers were more psychologically affected, with
They also noted that burned children placed less importance 12.5% experiencing PTSD and 18.5% experiencing major de
on areas which were out of their control and were satisfied pression [29]. Using elements from the SPRINT, Seivert et al.
with themselves in areas they held most important. In this (2019) demonstrated that parents of non-White children were
case, authors suggested that positive reports of self-esteem in found to report higher depression scores [30,31]. Rizzone
pediatric burn patients could be an attempted defense me et al. (1994) determined that 52% of mother’s whose child
chanism [14]. experienced a large burn (mean TBSA burn = 37.9%) met
A surprising finding in our study was that burns to the criteria for PTSD at one point after their child’s burn injury.
head and neck were not found to significantly affect our This result could help explain our small proportion of care
younger or older patients’ QoL as compared to burns located givers who met PTSD criteria, as the median TBSA burn in our
on the torso and extremities. Just 16.4% of our cohort sus cohort was 1.0%. Multiple other studies also support our
tained burns to the head/neck, but this region is typically at findings that suggest an increase in TBSA burn is associated
an overall increased risk for burn injury due to its rarely being with increased PTSD symptoms in caregivers [23,27,32].
protected by clothing. The face is also a focal point in one’s These results and the consistent evidence within the litera
personal identity and is readily exposed to the public. It ture suggest that routine caregiver distress screening is ne
controls vital functions like eating, vision, and speech, but cessary after a pediatric burn injury.
also allows us to participate in social interactions [19]. It may,
therefore, require advanced treatment to obtain both func
tional and aesthetically pleasing outcomes for the patient 7. Limitations
[20]. Burns to the face/head may also lead to societal stigma,
amplifying psychosocial issues during recovery; however, There are a few limitations associated with this study. First,
QoL was not influenced as we had expected during the this was a retrospective cohort design which focused only on
follow-up of this cohort [19,21]. pediatric burn patients without a corresponding control
More studies exist which examine the psychological group for comparison, as seen is a few other studies within
burden on caregivers following a burn injury in a child. the literature [3,14,15,17,18]. However, the IDQOL and CDLQI
Though a smaller proportion of caregivers in our cohort met are consistent and valuable QoL tools which are skin-focused
SPRINT criteria for structured PTSD evaluation (4.5%), studies and have been validated for use specifically in burn patients.
have consistently demonstrated that a burn injury to a child Another limitation of this study is the time interval from date
may be one of the most stressful life events for a parent/ of injury to survey completion (median 9 days). Although this
caregiver [22–27]. Evidence has also shown that caregivers may be an early timeframe to conduct QOL assessments in
tend to experience guilt, depression, anxiety, hostility, and burn patients, it does provide some insight as to how they are
post-traumatic stress responses after their child’s burn affected after leaving the hospital. Difficulties with sleep,
burns 49 (2023) 1311–1320 1319
pain, pruritus, mood, feelings, leisure, personal relationships, insight as to whether effects on QoL from burn injury in
school or holidays are among some of the aspects we were crease or decrease over time. This may help providers who
able to evaluate, even in a short follow up time period. Fur perform follow up care for these patients understand whe
ther studies conducting QOL assessments at 3 months, 6 ther effects on QoL are more related to the initial TBSA burn
months, and 1 year would be beneficial to evaluate longer- and/or severity or to the subsequent scarring that patients
term outcomes, such as scarring and contracture. We were develop.
also limited by the variables available within our dataset,
specifically, in our ability to assess the types of dressings, Funding
dermal substrates, and grafts utilized in each patient and
their need for surgical procedures. These are important None.
variables which affect patients’ clinical progress and should
be studied in the future.
CRediT authorship contribution statement
Additionally, while hospital admission LOS may be a po
tential confounder influencing QoL scores, in our cohort, less
Kelli Patterson, Katherine Lehman, and Sarah VerLee con
than 20% of patients had a hospital admission with a
ceptualized and designed the study, coordinated data col
LOS > 1 day. To explore potential confounding, a sensitivity
lection, drafted the initial manuscript, and reviewed and
analysis was performed in this subset of patients to include
revised the manuscript, Tariku Beyene designed the data
LOS in the multivariate models. Results showed that LOS was
collection instruments, collected data, carried out the initial
positively associated with the QoL scores, but it was not
analyses, and reviewed and revised the manuscript, Dana
statistically significant. However, it is possible that our study
Schwartz, Renata Fabia, and Rajan Thakkar conceptualized
was not powered to detect an association between QoL and
and designed the study, coordinated and supervised data
LOS due to the low number of patients with LOS > 1 day.
collection, and critically reviewed the manuscript for im
Larger, multi-institution studies would likely be beneficial in
portant intellectual content, All authors approved the final
further identifying more rare clinical characteristics and their
manuscript as submitted and agree to be accountable for all
effect on QoL in children with burns.
aspects of the work.
Our study is unique in that is evaluates multiple age
groups’ QoL using skin-focused validated assessments
Conflicts of interest statement
(IDQOL and CDLQI). It concurrently evaluates the psycholo
gical disturbances in caregivers using the SPRINT assess
All authors have no conflicts of interest to declare. The au
ment, which is an updated and validated tool used to screen
thors have no commercial associations or sources of support
for PTSD. We were also able to identify clinical burn char
that might pose a conflict of interest.
acteristics, like TBSA burn and burn depth, which may in
crease a child’s likelihood to experience QoL disturbances
and a caregiver’s likelihood to need a structured psycholo Appendix A. Supporting information
gical assessment for PTSD. These findings may be helpful
during follow up for patients, in that younger children with Supplementary data associated with this article can be found
larger or 2nd degree deep partial thickness burns, older in the online version at doi:10.1016/j.burns.2023.01.010.
children with larger burns, and caregivers of patients with
larger or 3rd degree burns may need closer psychological references
follow up. We also found that burns to the face, head, and
neck did not significantly affect our children’s QoL as com
pared to burns sustained to other areas of the body, and this [1] Haines E, Fairbrother H. Optimizing emergency management
to reduce morbidity and mortality in pediatric burn patients.
was surprising to us as adult providers because we expected
Pedia Emerg Med Pract 2015;12(5):1–23. quiz 24-5.
face/head/neck burns to be the cause of more distress. This
[2] Patterson KN, Fabia R, Giles S, et al. Defining benchmarks in
could be attributed to more superficial and often single site pediatric burn care: inception of the pediatric injury quality
burns being sustained to the head/neck compared to other improvement collaborative. (PIQIC) J Burn Care Res 2021.
body regions or may be attributed to a smaller number of https://doi.org/10.1093/jbcr/irab048
patients with head/neck burns. [3] Maskell J, Newcombe P, Martin G, Kimble R. Psychosocial
functioning differences in pediatric burn survivors
compared with healthy norms. J Burn Care Res Jul-
2013;34(4):465–76.
8. Conclusion [4] Parrish C, Haines RT, Stewart D, et al. Assessing child quality
of life impairments following pediatric burn injuries: rasch
QoL is often complex and individualized to the experiences of analysis of the children's dermatology life quality index.
the patient or their caregiver; however, it is fair to say that for Qual Life Res 2020;29(4):1083–91.
many of our pediatric burn patients and their families, QoL [5] Stewart D, Caradec J, Ziegfeld S, Reynolds E, Ostrander R,
Parrish C. Predictors and correlates of pediatric postburn
will be impacted in some way. Pediatric patients and their
pruritus in preschool children of ages 0 to 4. J Burn Care Res
caregivers would, therefore, benefit from universal psycho
Nov- 2019;40(6):930–5.
logical screening and/or intervention after burn injury. [6] Spronk I, Legemate CM, Polinder S, van Baar ME. Health-
Future studies which assess QoL in these patients long related quality of life in children after burn injuries: A
itudinally (i.e. 1 month, 6 months, and 1 year) could provide systematic review. J Trauma Acute Care Surg
1320 burns 49 (2023) 1311–1320