Health-related quality of life in Swedish pediatric burn patients and associations with burn and family characteristics

JBUR-4181; No. of Pages 8

Health-related quality of life in Swedish pediatricburn patients and associations with burn andfamily characteristics

J. Sveen a,*, F. Sjoberg b, C. Oster a

aDepartment of Neuroscience, Psychiatry, Uppsala University, Uppsala, SwedenbDepartment of Clinical and Experimental Medicine, Linkoping University, Linkoping, Sweden

b u r n s x x x ( 2 0 1 3 ) x x x – x x x

a r t i c l e i n f o

Article history:

Accepted 4 October 2013

Keywords:

Burns

Child

Outcome assessment

Health-related quality of life

a b s t r a c t

Although many children with burns recover well and have a satisfying quality of life after

the burn, some children do not adjust as well. Health-related quality of life (HRQoL) focuses

on the impact health status has on quality of life. The aim of this study was to assess HRQoL

with the American Burn Association/Shriners Hospitals for Children Burn Outcomes Ques-

tionnaire (BOQ) in a nationwide Swedish sample of children with burns 0.3–9.0 years after

injury. Participants were parents (n = 109) of children aged up to 18 years at the time of

investigation who were treated at the Linkoping or Uppsala Burn Center between 2000 and

2008. The majority of children did not have limitations in physical function and they did not

seem to experience much pain. However, there were indications of psychosocial problems.

Parents of preschool children reported most problems with the children’s behavior and

family disruption, whereas parents of children aged 5–18 years reported most problems with

appearance and emotional health. There were mainly burn-related variables associated

with suboptimal HRQoL in children aged 5–18 years, while family-related variables did not

contribute as much.

# 2013 Elsevier Ltd and ISBI. All rights reserved.

Available online at www.sciencedirect.com

ScienceDirect

journal homepage: www.elsevier.com/locate/burns

1. Introduction

Burns are one of the most traumatic injuries a child can

experience. A severe burn is a life-threatening state that

challenges all of the main integrating systems in the body.

Moreover, the in-hospital treatment is associated with tremen-

dous pain, which can be a traumatic experience in itself. Young

children between zero and four years of age constitute almost

one-third of all burn victims in Sweden, and another 10% are

aged 5–14 years [1]. A similar pattern is seen in other Western

countries, such as in the British Isles [2]. Hot liquid burn is the

most common type of injury in young children, and it often

* Corresponding author at: Institute of Neuroscience, Psychiatry, UppsTel.: +46 18 611 5206.

E-mail address: [email protected] (J. Sveen).

Please cite this article in press as: Sveen J, et al. Health-related quality of lfamily characteristics. Burns (2013), http://dx.doi.org/10.1016/j.burns.201

0305-4179/$36.00 # 2013 Elsevier Ltd and ISBI. All rights reserved.http://dx.doi.org/10.1016/j.burns.2013.10.005

occurs in the home with a parent nearby [3–6]. Burn by flame is

more common in older children and normally results in a larger

body surface area being burned. Today most children with

burns survive, and the mortality rate in the most severe burns,

i.e. �90% of the total body surface area (TBSA) burned, is as low

as 55% [7]. Although many children with burns recover well and

have a satisfying quality of life after the burn, some children do

not adjust as well [8,9].

There is no clear consensus regarding the definition of

quality of life or health-related quality of life. Quality of life

(QoL) can be defined as a multi-dimensional concept that

refers to an individual’s total wellbeing, including psychologi-

cal, social, and physical aspects. Health-related quality of life

ala University Hospital, 751 85 Uppsala, Sweden.

ife in Swedish pediatric burn patients and associations with burn and3.10.005

http://dx.doi.org/10.1016/j.burns.2013.10.005

mailto:[email protected]


http://www.sciencedirect.com/science/journal/03054179

http://dx.doi.org/www.elsevier.com/locate/burns


b u r n s x x x ( 2 0 1 3 ) x x x – x x x2


(HRQoL) focuses on the impact health status has on quality of

life [10]. There is only one burn-specific HRQoL instrument for

children, the age-specific American Burn Association/Shriners

Hospitals for Children Burn Outcomes Questionnaire (BOQ)

[11,12]. It has been translated into several languages, but to the

best of our knowledge only the Dutch [13,14] and Swedish [15]

versions of the BOQ have been published to date. Different

terminology has been used for reporting the outcome of the

BOQ, such as functional outcome, QoL, and HRQoL. In this

study the outcome is referred to as HRQoL.

Most of the studies published on the outcome of the BOQ

are from the Multi-Center Benchmarking Study Working

Group [16–21], which has conducted a prospective study on

children with burns up to four years after discharge from four

burn centers in the United States. In addition, they have

constructed recovery curves for preschool- and school-aged

children. In one of these studies [20] it was found that specific

family characteristics affected HRQoL after severe burn in

children (5–18 years), and that family cohesion, indepen-

dence, active recreational orientation, and organization had a

positive impact on HRQoL. Another study [18] reported that

children (5–18 years) with facial burns had worse outcomes on

the psychosocial domains of the BOQ than children without

facial burns, especially in the subscales appearance, emo-

tional health and parental concerns. Two of the studies

investigated the impact of hand burns on HRQoL. One [19]

found that young children (0–4 years) with hand burns had

worse HRQoL than children with burns in other body areas,

regardless of burn size, while in the other study [21] it was

reported that children (0–18 years) with hand burns had good

HRQoL, which continued to increase for at least two years

after the burn.

Thus far only one European study [22] has examined

quality of life and factors associated with suboptimal out-

comes on the BOQ (5–18 years). It was found that the most

frequently reported problems were related to itch, appear-

ance, parental concern, emotional health and satisfaction

with current state. In addition, children with more severe

burns had worse outcomes on several of the BOQ subscales

compared to children with less severe burns (<10% TBSA).

The aim of this study was to assess HRQoL in a nationwide

Swedish sample of children with burns and to identify

possible contributing factors to suboptimal outcomes on the

BOQ (5–18 years). A second aim was to describe the outcome

on the BOQ (0–4 years) for preschool children.

2. Methods

2.1. Participants and procedure

The Linkoping Burn Center and the Uppsala Burn Center are

the two main Swedish burn centers with nationwide

responsibility for treating patients with severe burns.

Admission criteria are based on the recommendations of

the American Burn Association. At the time of the study, the

catchment area included approximately 6.3 million inhabi-

tants (approximately 70% of the Swedish population). The

sample for this study comprised consecutively admitted

patients at the two burn centers between January 2000 and


December 2008. All parents of children aged up to 18 years at

the time of investigation were included in the study, and a

total of 220 children fulfilled the age criterion. Addresses for

14 of the families were unknown, leaving a total possible

study sample of 206 families.

The families first received an information letter describing

the study. After one week they received a questionnaire

booklet and a prepaid response envelope. The booklet

included questionnaires covering the child’s outcome post

burn and the parent’s health (parent-report versions). Three

weeks after the initial questionnaire booklet was sent, non-

responders received a reminder letter and a new copy of the

questionnaire booklet. The results from the Burn Outcomes

Questionnaire (BOQ) will be presented in this study.

There were two parent-report versions: one for parents of

children 0–4 years of age and one for parents of children aged

5–18 years. All responders received a lottery ticket worth

2.5 Euros. The study was approved by the Regional Ethics

Review Board in Uppsala.

2.2. Measures

2.2.1. BOQ (0–4)The BOQ (0- to 4-year-olds) [12] consists of 10 subscales: play,

language, fine motor, gross motor, behavior, family disruption,

pain/itching, appearance, satisfaction, and concern/worry.

Higher scores denote better health outcome, except for the

subscales pain, family disruption, and concern/worry in which

the scoring is reversed. The BOQ (0–4) questionnaire has

previously been validated in a Dutch population [14].

2.2.2. BOQ (5–18)The BOQ (5- to 18-year-olds) [11] consists of 12 subscales:

upper extremity function, physical function and sports,

transfers and mobility, pain, itch, appearance, compliance,

satisfaction with current state, emotional health, family

disruption, parental concern, and school re-entry. Higher

scores denote better health outcome, except for the subscales

pain, itch, family disruption, and parental concern in which

the scoring is reversed. The BOQ (5–18) questionnaire has

previously been validated in a Swedish population [15].

Mean scores were calculated for all subscales in the two

questionnaires. At least 50% of the items in a subscale had to

be filled in by the participant for a mean to be calculated [11].

Each subscale was transformed linearly to a 0–100 scale, in

accordance with the original American BOQ 5–18 [11]. This

approach was used for both questionnaires in order to allow

for comparisons, even though normed scores for BOQ 0–4 have

been reported previously [12].

2.2.3. Child-, injury-, and parent characteristicsData regarding length of stay as inpatients at the burn center

(LOS), TBSA, TBSA with full-thickness burns (TBSA-FT), age

and gender were gathered from the children’s medical

records. Parents were asked to report the presence of visible

scars (on hands, face, or neck) at the time of the investigation

(1 = present, 0 = not present).

The BOQ included information on pre-existing co-morbid-

ity, including medical, developmental, and psychological

problems (1 = present, 0 = not present), whether parents were



b u r n s x x x ( 2 0 1 3 ) x x x – x x x 3


living with the child before and after the burn, educational

level of both parents. Parent education was divided into

0 = nine years of compulsory school, high school degree or

upper secondary school, and 1 = university degree.

2.2.4. Family Climate ScaleThe Family Climate Scale (FCS) [23] is a family diagnostic

self-report instrument comprising a list of 85 adjectives

selected to reflect different aspects of the emotional

atmosphere in the family. The participant marks a mini-

mum of 15 adjectives from the list that best describe his/her

family. The scale contains four independent factors; three of

them, closeness, distance and chaos, were used in this

study. Closeness (harmony, warmth and security) comprises

18 adjectives such as happy, warm, tender and stable.

Distance (coolness, rejection and negative feelings) com-

prises 11 adjectives such as intolerant, bad and cold. Chaos

(confusion, nervousness and instability) comprises six

adjectives such as dizzy, nervous, insecure and unstable.

The scale was constructed on an empirical basis from the

words commonly used by family members when describing

their families and was designed to give an internalized

picture of the family. The fourth factor, expressiveness, was

excluded from the present study because of its unsatisfac-

tory psychometric properties [24]. The test–retest reliability

has shown to be high in previous research (3 weeks, r = 0.95;

5 months, r = 0.89) and good construct validity [23]. Non-

clinical groups have reported higher scores on closeness and

Table 1 – Descriptive data concerning child-, injury-, parent-,

0–4 years (n = 39)

Mean (SD)

Age at injury (year) 1.5 (0.8)

Age at study (year) 3.3 (1.1)

Time since burn (year) 1.8 (0.9)

TBSA 7.0 (4.0)

TBSA-FT 0.5 (1.6)

LOS (days) 4.0 (6.5)

Family Climate Scale

Closeness 3.9 (0.7)

Distance 0.3 (0.4)

Chaos 0.5 (1.3)

Boys

Girls

Co-morbidity

Visible scars present

Cause

Scald

Fire

Contact

Electricity

Mother higher educationa

Father higher educationa

Lived with both parents at time of injury

Living with both parents at time of study

Owing to missing values, sample size varied between 34 and 39, 0–4 yeaa Higher education = university degree.


lower scores on distance and chaos, than families with

psychiatric problems [25–27].

2.3. Statistical analysis

Responders and non-responders were compared with Stu-

dent’s t test and x2 analysis, and Fischer’s exact test was used

when appropriate. To establish predictive models, logistic

regressions were performed with suboptimal outcomes on the

subscales of the BOQ (5–18) as dependent variables. Due to

skewed distribution in all subscales the definition of subopti-

mal outcome was used [22] and was defined as a less than

optimal score on the BOQ subscales, except on school re-entry

for which suboptimal was a score <50 (worse acceptance or

worse ability to perform school work).

The possible predictors were variables during hospitaliza-

tion: TBSA, TBSA-FT, LOS, age at injury, gender, lived with both

parents; and variables at the time of the study: age at study, co-

morbidity, visible scars present, mother’s and father’s educa-

tion, living with both parents, and Family Climate Scale. The

predictor variables were examined with Student’s t test and x2

analysis and those having a p-value � 0.10 were included in

subsequent forward conditional logistic regressions. In addi-

tion, time since injury was adjusted for and included in all the

regression analyses. Due to skewed distributions, TBSA, TBSA-

FT and LOS were logarithmically transformed, and since they

were highly correlated, only one of them was included in each

multiple regression. The variable with the strongest bivariate

and family characteristics.

5–18 years (n = 70)

Range Mean (SD) Range

0.3–4.1 4.1 (4.2) 0.6–15.7

0.4–4.9 9.5 (3.5) 5.1–18.0

0.1–3.7 5.4 (2.4) 0.3–9.0

0.1–15.0 10.5 (12.7) 0.2–70.0

0.0–8.0 4.7 (12.2) 0.0–70.0

0–37 14.6 (43.6) 0–301

1.9–4.7 3.7 (0.9) 1.2–4.7

0–1.1 0.5 (0.6) 0–1.9

0–5.7 0.5 (1.1) 0–4.7

n (%) n (%)

23 (59) 47 (67)

16 (41) 23 (33)

8 (21) 21 (30)

13 (33) 25 (36)

36 (92) 45 (64)

0 (0) 17 (24)

2 (5) 6 (9)

1 (3) 2 (3)

11 (32) 26 (39)

10 (27) 16 (25)

34 (94) 56 (85)

31 (79) 48 (72)

rs; and 63 and 70, 5–18 years.



Table 2b – Subscale scores on the BOQ 5–18.

Scale BOQ 5–18

Mean (SD) Median Range Suboptimal n (%)

Upper extremity function 98 (6) 100 67–100 12 (17)

Physical function and sports 96 (10) 100 39–100 16 (23)

Transfers and mobility 99 (3) 100 80–100 4 (6)

Paina 4 (10) 0 0–38 11 (16)

Itcha 9 (17) 0 0–75 20 (29)

Appearance 77 (29) 94 6–100 40 (58)

Compliance 90 (19) 100 5–100 16 (38)

Satisfaction with current state 92 (15) 100 38–100 22 (43)

Emotional health 89 (18) 94 19–100 34 (51)

Family disruptiona 10 (17) 0 0–70 31 (45)

Parental concerna 14 (22) 0 0–100 30 (45)

School re-entryb 53 (13) 50 25–100 12 (25)

a Score in the domain is reversed.b Suboptimal score was <50 (worse acceptance or worse ability to perform school work).

Table 2a – Subscale scores on the BOQ 0–4.

Scale Mean (SD) Median Range Suboptimal n (%)

Play 97 (11) 100 40–100 6 (17)

Language 94 (13) 100 50–100 13 (40)

Fine motor 93 (15) 100 21–100 13 (35)

Gross motor 95 (17) 100 13–100 7 (19)

Behavior 80 (17) 83 11–100 33 (85)

Family disruptiona 19 (16) 18 0–50 33 (87)

Pain/itcha 3 (7) 0 0–23 6 (16)

Appearance 97 (12) 100 33–100 3 (8)

Worrya 19 (26) 95 0–100 18 (47)

Satisfaction 93 (9) 0 0–100 21 (57)

a Score in the domain is reversed.

b u r n s x x x ( 2 0 1 3 ) x x x – x x x4


association with the dependent variable was included in the

logistic regressions. The relative risks were estimated by odds

ratios (ORs) with 95% confidence intervals (CI), and the

Nagelkerke R2 was used as an approximation of the explained

variance in the best fitted models. Owing to response rates,

sample sizes varied between 42 and 70. Only descriptive

results from the BOQ (0–4) were included in the study, as it has

not been validated because of the small sample size (n = 39).

All analyses were performed with the statistical package IBM

SPSS 21.0.

3. Results

3.1. Response and characteristics of parents and childrenwith burns

Of 205 families, 109 (53%) completed the questionnaire. There

were no differences between responders and non-responders

with regard to age, injury characteristics, or time since burn.

Eighteen of the responders were fathers, 68 were mothers and

two were stepparents. Mothers and fathers filled in five of the

questionnaires jointly, and 16 respondents had not stated who

filled in the questionnaire.

Demographics and characteristics of the two age groups of

children are summarized in Table 1. There was a wide range of


burn severity, from a mean TBSA burned of 7.0% (range 0.1–

15.0) in the preschool children up to a mean TBSA burned of

12.0% (range 0.5–62.0) in the older ages, and subsequently a

variation in number of days in the hospital, from 0 to 301 days.

Scald was the most common cause of injury in both age

groups.

3.2. Health-related quality of life after burns

Health-related quality of life as measured in the BOQ subscales

was generally high in the two age groups (Tables 2a and 2b).

3.2.1. BOQ 0–4Parents most often reported suboptimal scores in the behavior

and family disruption subscales, 85% and 87%, respectively.

Suboptimal scores were also prevalent in the satisfaction and

worry subscales. A suboptimal outcome related to appearance

was reported by a minority of the parents.

3.2.2. BOQ 5–18More than half of the parents reported less than optimal

scores in the appearance and emotional health subscales, 58%

and 51%, respectively. In the family disruption, parental

concern and satisfaction with current state subscales, 43–45%

of the children had suboptimal scores. In school re-entry, 71%

of the parents reported the same acceptance by teachers and



Table 3 – Multiple regressions with child-, injury-, and family characteristics as independent variables and the BOQ subscales as dependent variables, odds ratios (95% CI).

Upperextremityfunction

Physicalfunction

and sports

Compliance Appearance Satisfactionwith current

state

Emotionalhealth

Pain Itch Familydisruption

Parentalconcern

Schoolre-entry

Age at injury

(year)

x x x x

Age at study

(year)

x x 1.5 (1.2–2.0)** x

Gender (boys/

girls)

x 8.8 (1.5–50.9)* x x

Co-morbidity

(yes/no)

x x 7.5 (1.5–38.7)* x

Time since

burn (year)

x x x x x x x x x x 2.5 (1.3–4.6)**

TBSA x 16.0 (1.7–151.7)* 8.4 (1.4–49.5)*

TBSA-FT x 4.6 (1.2–17.9)* 19.3 (3.4–109.4)*** 30.7 (3.7–259.6)**

LOS 3.4 (1.1–10.6)* x

Visible scars

present

4.3 (1.0–17.9)* 3.3 (1.0–10.8)* 4.9 (1.2–14.3)* 6.8 (1.1–40.8)*

Family Climate

Scale

Closeness

Distance

Chaos 4.0 (1.0–15.4)* 2.3 (1.1–4.7)* x

M education x 5.8 (1.3–24.9)* x

F education x x

Lived with BP x x x

Living with BP x

Nagelkerke R2 0.10 0.09 0.26 0.39 0.16 0.14 0.11 0.50 – 0.51 0.48

TBSA-FT, total body surface area with full-thickness burns; LOS, length of hospital stay; M, Mother’s; F, Father’s; BP, both parents; x, independent variables with p < 0.10 in Student’s t test and x2

included in the regressions, but did not contribute significantly to the model.* p � 0.05.** p � 0.01.*** p � 0.001.

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schoolmates and the same performance by the child as before

the burn, and 25% reported worse outcomes.

3.3. Predictive models

Logistic regression analyses were conducted on the BOQ (5–18)

subscales (Table 3) except for the transfer and mobility

subscale where the suboptimal group was too small (n = 4).

Moreover, on the subscale family disruption none of the

dependent variables were significant in the regression model.

At the time of the investigation older children had a higher

risk of having problems with their appearance. Girls had a

higher risk than boys of having problems with itch. Children

with pre-comorbidity had a higher risk of having problems

with itch. Children with more recent burns had a lower risk of

having problems with school re-entry.

Children with more severe burns (TBSA, TBSA-FT, and LOS)

had a higher risk of having problems with compliance,

satisfaction with current state, emotional health, pain, itch,

and parental concern. The presence of visible scars increased

the risk of having limitations in upper extremity function and

physical function and sports, and problems regarding parental

concern and return to school.

The family-related variables did not contribute as much as

expected to the suboptimal outcome on the subscales. Of the

three domains from the FCS, family closeness and distance

were not associated with suboptimal outcome on any of the

subscales. The chaos domain was associated with more

limitations in upper extremity function, and with more

problems on the appearance subscale. Mothers with a higher

level of education had a higher risk of problems with parental

concern.

The highest explained variance was for the subscales itch,

parental concern, and school re-entry, Nagelkerke R2 0.48–

0.51.

4. Discussion

Health-related quality of life in the children was generally

good 0.3–9.0 years after the burn. However, when examining

suboptimal scores, more than half of the younger children (0–4

years) had some problems with behavior and parents reported

problems with family disruption, and satisfaction. The

majority of the children aged 5–18 years had problems with

appearance and emotional health, and 45% of the parents

reported problems with family disruption and parental

concern. The majority of children did not have limitations

in physical function and they did not seem to experience

much pain. Proposed risk factors associated with poorer

HRQoL were analyzed with logistic regressions, which

revealed that mainly burn-related variables were associated

with suboptimal HRQoL, and family-related variables did not

contribute as much.

It can be difficult to compare results between studies, as

there are often methodological differences involving such

factors as time since burn, burn severity, and different

outcome measurements. For instance, the pediatric burn

study population in the United States tends to have more

severe burns than are usually seen in our pediatric burn study


population. This is partly because of the different admission

criteria at the burn centers; for example, we include children

with first degree burns, which they do not. In addition, the

studies from the Multi-Center Benchmarking Study Working

Group [16–21] use z-transformed BOQ scores, which makes it

harder to compare outcomes. In the present study there seems

to be a more positive outcome on the BOQ, which could be

expected as we have smaller burns and a longer time since

burn in our sample.

The higher proportion of suboptimal scores in several

subscales seen in the parents’ report of younger children

compared to children 5–18 years can be a function of time

since burn, which is closer to the study for children younger

than 5 years than the older children (1.8 years vs. 5.4 years).

Burn recovery is a process that occurs over time [16]. Even

though we cannot exclude the possibility that parents of

children 0–4 year have more concerns and worry after the burn

than parents of older children. However, further investigation

is required to interpret this result.

The generally high mean subscale scores and at the same

time high percent of suboptimal scores for preschool children

in our study were also found in a study evaluating the BOQ 0–4

[14], with almost the same mean time since burn. In our study

the highest suboptimal scores were on the behavior and

family disruption subscales (85 and 87%, respectively), and

these were also the subscales with highest suboptimal scores

(91 and 62%, respectively) in the study by van Baar et al. [14]. In

addition, they reported 62% suboptimal scores on the pain/

itch subscale, which was much higher than the 16% in our

study. One explanation can be the differences in TBSA;

although the median TBSA was almost the same, there were

more severe injuries in the Dutch study sample (TBSA range

0–66 vs. 0.1–15).

In the Dutch studies by van Baar et al. [13,22] on 5- to 18-

year-olds, the data on burn severity are similar to our data

(mean TBSA 10% vs. 10.5%). However, they had more recent

burns than in our study (0.3–3.3 vs. 0.3–9.0 years). The

prevalence of suboptimal outcomes in the present study is

comparable to that in the study by van Baar et al. [22]. For

example, both studies had a high prevalence of suboptimal

outcomes in appearance and emotional health, and a low

prevalence in the physical function domains. This indicates

that some aspects of psychosocial recovery take time, while

regaining physical function after a burn in a child is a more

rapid process.

Our study had a lower prevalence of itch and pain. In the

study by van Baar et al. [22], suboptimal scores on itch were

lower in the group with more than two years since the burn.

This suggests that itch decreases over time after a burn, and

the lower prevalence in our study could be because of the

longer time since burn.

Several burn-related variables partly explained suboptimal

outcomes on most subscales for children 5–18 years. Having

visible scars was associated with poorer HRQoL in several

domains. Parental concern was more likely in parents of

children with full-thickness burns and visible scars. It could be

that parents of children with visible scars are more often

reminded of the burn and hence express more concern.

Children with visible scars were also more likely to have

problems with school re-entry. However, visible scars were



b u r n s x x x ( 2 0 1 3 ) x x x – x x x 7


not associated with the outcome on the appearance subscale,

which might have been expected. More severe burns, as

assessed with TBSA, TBSA-FT and LOS, were associated with

poorer HRQoL, which is consistent with van Baar et al. [22].

Studies [28,29] using other outcome measurements have also

found that burn severity is associated with worse outcome for

HRQoL.

One might think that highly modern treatment provided by

multidisciplinary pediatric burn teams in developed countries

leading to often optimal functional and satisfactory appear-

ance would reduce burn severity as a factor impacting HRQoL.

Nevertheless, the results in the present study indicate that

burn severity was associated with burn specific HRQoL.

The results could not identify pre-existing health problems

as associated with poorer HRQoL, which is in agreement with

van Baar et al. [22], a study also using the medical,

developmental, and psychological problems defined in BOQ

[11].

Most of the family-related variables were not associated

with the outcome regarding HRQoL. Previous studies [20,30]

have shown that positive family relationships predict better

HRQoL in children with burns. Landolt et al. [30] used the

Family Relationship Index (FRI) and found that children’s

generic HRQoL 1–13 years post burn was best predicted by

greater family cohesion, higher expressiveness, and less

conflicts within the family. No burn-related characteristics

were predicting HRQoL, but the authors discuss their result of

age at injury as the second most important variable and the

possibility that this finding may be an artifact of more severe

injuries in the older children. In a study from United States the

Family Environment Scale (FES) was used together with BOQ

[20]. All subscales in BOQ, except pain, were associated with

one or more of the FES subscales scores, together with burn

size, and time since burn.

Contradictory to these previous results of several family

characteristics associated with outcome in HRQoL, our

analyses could not reveal this, except for associations between

a family climate characterized by chaos and parents reporting

more problems with upper extremity function and appear-

ance. This is in line with reporting of less problems and good

HRQoL if there were greater family cohesion, good organiza-

tion and less conflict within the family [20,30]. The only other

significant association with a family variable in the regres-

sions was in the subscale parental concern where mothers

with a higher level of education reported more problems. A

cautious interpretation is that a high level of education could

be related to high achievement orientation, previously showed

to have a negative impact on emotional health and family

disruption in BOQ [20].

We cannot exclude the possibility that the results, which

showed that family climate was not associated with the

HRQoL outcome, are because of poor validity of the FCS, as it

has not been validated in the burn population. This concern

limits the interpretation of the results and further research is

needed to validate this instrument in the burn population.

Due to the skewed distribution of scores on the BOQ

subscales, we dichotomized the data into optimal versus

suboptimal outcomes (defined as less than optimal), which is

an arbitrary categorization previously used by van Baar et al.

[22]. By considering our results along with the results of van


Baar, it might be possible to generalize the findings to other

samples with similar socioeconomic backgrounds and similar

burn samples.

The variance that was explained in the suboptimal

outcomes of the BOQ, as measured with Nagelkerke R2, was

low to moderate, and in family disruption it was zero. This

suggests that factors other than those included in the present

study may better predict aspects of HRQoL in children with

burns.

The cross-sectional design limits possible conclusions

based on the regression analyses. The analyses are statistical

predictors and do not represent actual predictions over time

regarding variables obtained at the same time as the BOQ, i.e.

visible scars, family-variables, or variables that might have

been affected by memory bias such as persons living with the

child before the burn and pre-existing health problems. The

regression analyses in the study were a tentative attempt to

distinguish what factors might have an impact on HRQoL.

Another limitation is the cross-sectional design, with a wide

time-range since burn. A prospective study, with several

follow-up assessments, would be preferable for documenting

the recovery pattern, as seen in the Multicenter Benchmarking

Study group [16–21]. Strength of the study is the use of a

Swedish nationwide sample and including of all ages between

0 and 18 years.

In this study parents filled in the questionnaire rather than

the children themselves. Meyer et al. [17] has previously

shown that the BOQ is generally rated similarly by adolescents

and their parents, with the exception of appearance, itch, and

school reentry, where there seem to be systematic differences.

There is some evidence that parents are better able to judge

children’s physical HRQoL as compared to the emotional

domains [31]. Even though there is a BOQ self-report for 11 to

18 year-olds, there is evidence that the minimum age for self-

reports is as low as 5–6 years [32]. It would be of value to

involve younger children in the upcoming processes of

developing instruments for assessing children’s HRQoL [33].

5. Conclusion

This study concludes that 0.3–9.0 years post burn most

children have physically recovered, however, some psycho-

social problems remained. Burn-related variables had the

most impact on the HRQoL, whereas family-related variables

did not contribute as much. The results indicate that the

severity of the child’s burn is associated with psychosocial

distress in the child and in his or her family as perceived by the

parent. Even though the physical injuries are healed, the

psychosocial strains can sometimes remain. This underscores

the importance of offering supportive interventions to

children and families after a burn, and health-care profes-

sionals should be aware of that even though the child have

recovered from the physical injuries, there may still be

psychosocial distress affecting the child and the family.

Conflicts of interest statement

There are no conflicts of interest to declare.



b u r n s x x x ( 2 0 1 3 ) x x x – x x x8


Acknowledgments

This research was supported by the Swedish Research

Council. The study sponsor had no involvement in the study

design, in the collection, analysis, or interpretation of data; in

the writing of the manuscript; or in the decision to submit the

manuscript for publication.

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Health-related quality of life in Swedish pediatric burn patients and associations with burn and family characteristics