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Int. J. Cancer: Supplement 12, 52–57 (1999)
r 1999 Wiley-Liss, Inc.
Publication of the International Union Against Cancer
Publication de l’Union Internationale Contre le Cancer
SOMATIZATION, ANXIETY AND DEPRESSION AS MEASURES
OF HEALTH-RELATED QUALITY OF LIFE OF CHILDREN/ADOLESCENTS
WITH CANCER
Julia M. CHALLINOR1*, Christine A. MIASKOWSKI1, Linda S. FRANCK1, Robert E. SLAUGHTER1, Katherine K. MATTHAY1,
Robin F. KRAMER1, Janet J. VEATCH1, Steven M. PAUL1, Michael D. AMYLON2 and Ida M. MOORE3
1University of California, San Francisco, San Francisco, CA, USA
2Lucile Salter Packard Children’s Hospital at Stanford, Stanford, CA, USA
3University of Arizona, Tucson, AZ, USA
This descriptive study of health-related quality of life of
children with cancer compared children/adolescents’, parents’ and teachers’ ratings for somatization, depression and
anxiety to determine if there were significant correlations
among respondent scores. In addition, the percentage of
agreement among respondents and significant differences
based on age, gender, use of cranial radiation and treatment
status were measured. Forty-three children/adolescents with
cancer, currently receiving therapy for at least 1 year or who
had completed therapy for no more than 3 years (excluding
children who had received bone marrow transplants or who
had brain tumors), were recruited, with a parent and teacher,
from 3 university medical centers. The Behavioral Assessment System for Children questionnaires for children/
adolescents, parents and teachers were used. Parents reported a higher level of depression for the children/adolescents
with cancer than did the teachers or the children/adolescents
themselves. Parents reported a higher level of anxiety for the
children/adolescents than did the teachers. High positive
correlations were found among scores from parents and
teachers and among scores from parents and children/
adolescents for the anxiety and depression but not somatization subscales. Children/adolescents and teachers had high,
positively correlated scores only for the depression subscale.
High, positive correlations were found between somatization, anxiety and depression within each group of respondents. A significant percentage of agreement between all
respondents on ratings for at-risk status was obtained only for
the depression subscale. Age was the only variable found to
have an influence on scores and only for the anxiety subscale.
Int. J. Cancer Suppl. 12:52–57, 1999.
r 1999 Wiley-Liss, Inc.
Currently in the United States, 1 of every 475 children under the
age of 15 years will be diagnosed with cancer (Bleyer, 1990). Treatment
for cancer can last as long as 3 years for acute lymphoblastic leukemia
(ALL) or be as short as a few months for a solid tumor. However,
regardless of the specific cancer diagnosis, treatment may include
surgery, chemotherapy, radiation therapy or a combination of these
modalities. The health-related quality of life (HRQL) of children/
adolescents during cancer therapy as well as of the 65% of children
who will survive the disease is a concern for health-care teams,
families and the children/adolescents themselves.
Measures of HRQL evaluate the impact of a disease or treatment
on the patient (Bradlyn et al., 1996). For children/adolescents with
a chronic illness, such as cancer, HRQL is an important criterion
that can be used to make patient management decisions and to
evaluate the quality of health-care services (Fitzpatrick, 1993).
Children/adolescents undergoing cancer therapy experience marked
changes in their lives (e.g., schedules, health status, psychological
well-being and family roles). Children/adolescents who survive
cancer often do not return unmarked to a pre-disease state.
However, the severity of late effects related to cancer and its
treatment varies according to the diagnosis and treatment regimen
and other factors.
Researchers are in agreement that the choice of an appropriate
instrument to measure HRQL is a challenging task (Grant et al.,
1990; Jalowiec, 1990; Mulhern and Bearison, 1994). Evaluations
based on the responses of the children themselves can be enhanced
by questioning parents and teachers, who compare a particular
child/adolescent’s HRQL to that of other children/adolescents. Use
of multiple respondents is particularly important when assessing
the health and quality of life of children who are very young or of
children who are sick regardless of age (Eiser and Jenney, 1996).
Observation of children’s behavior has been a traditional method
of evaluating concepts such as pain status, developmental status,
motor skills, social skills and emotional status (Glascoe, 1995;
Eiser and Jenney, 1996). An evaluation of children’s behavior does
not directly describe traits or capabilities directly; rather, it allows
the researcher to make inferences about the children being studied
(Sattler, 1992). Assessments of children’s behavior while on cancer
therapy or following treatment of the disease allow the researcher
to make inferences about the children’s responses to the physical,
mental and social impacts of the illness on their HRQL.
The Behavioral Assessment System for Children (BASC) questionnaire is a 5-component assessment instrument designed to
measure the emotional and behavioral status of children and
adolescents ages 4 to 18 years (Reynolds and Kamphaus, 1992).
The system includes separate questionnaires to be completed by the
children’s teachers and parents and by the children/adolescents
themselves. Items on the questionnaires include positive and
negative behavioral observations that are rated by teachers and
parents as well as positive and negative feelings and selfperceptions that are rated by the children/adolescents. Normative
data for this instrument were based on the responses of 2,401
teachers, 3,483 parents and 9,861 children from 90 geographically
diverse sites in the United States and Canada. Three subscales of
the questionnaires have particular importance for children with a
chronic illness such as cancer. These subscales measure somatization, anxiety and depression and are important indicators of the
children/adolescents’ HRQL. These symptoms/problems occur in
healthy children as well as illness groups. Although in many ways
children with cancer are similar to their healthy peers, they are at
increased risk for somatization, anxiety and depression.
The results reported here are part of a larger study that examined
the general behavioral performance of children/adolescents with
cancer and those who had been treated recently for cancer using the
BASC questionnaires.
The purposes of this descriptive study of HRQL of children with
cancer were (i) to compare somatization, depression and anxiety
subscale scores of the BASC questionnaire among respondents
(i.e., parents, teachers, children/adolescents); (ii) to determine if
Grant sponsor: National Cancer Institute; Grant number: CA 78217;
Grant sponsor: Oncology Nursing Society/Sigma Theta Tau.
The contents of this publication are solely the responsibility of the
authors and do not necessarily represent the official views of the National
Cancer Institute.
*Correspondence to: Pediatrics Specialties Clinic, Box 0314 A 223, 400
Parnassus Avenue, San Francisco, CA 94143, USA. Fax: ⫹1–415–332–2582.
SAD MEASURES OF HRQL
there were significant correlations among respondent scores; (iii) to
determine if there were significant differences in the percentage of
agreement among respondents who are considered ‘‘at risk’’ as
defined by the authors of the BASC (i.e., at least 1 SD above the
mean of the normative data); and (iv) to determine if there were
significant differences based on age, gender, use of cranial radiation
and treatment status in the percentage of children/adolescents with
cancer who were rated ‘‘at risk’’.
MATERIAL AND METHODS
Setting
The study was based in 3 university medical centers: The
University of California, San Francisco (UCSF), The Lucile Salter
Packard Children’s Hospital at Stanford and the University of
Arizona. The study was approved by the Human Subjects Committee at all 3 centers.
Sample
Children were eligible to participate in the study if they met the
following criteria: (i) had a cancer diagnosis (excluding brain tumors as
these children have special problems), (ii) were between the ages of
6 and 16 years inclusive (for the present purposes, adolescents were
defined as the 12–14 year age group), (iii) were undergoing cancer
therapy for at least 1 year or had completed therapy for no more
than 3 years, (iv) were currently enrolled in school, (v) were
English-speaking and (vi) were receiving cancer treatment involving radiation and/or chemotherapy but not bone marrow transplant
(children who receive bone marrow transplants do not return to
school for at least 1 year following transplant). One family refused
to participate and a second was not approached due to a stressful
situation in the family at the time of the study. Of the 45 children
who were eligible to participate, only 1 was excluded a priori. The
sample consisted of 24 children who were undergoing therapy and
19 children who had completed therapy (i.e., were off therapy for
no more than 3 years) for a total sample of 43 children. A parent and
a teacher of each child were recruited to participate in the study.
Instrument
The teacher, parent and child/adolescent self-report BASC
questionnaires were used in this study. The parent and teacher
forms include 3 age levels (4–5, 6–11 and 12–18 years of age). The
child/adolescent self-report form is divided into 2 age groups (6–11
and 12–18 years of age). The parent and teacher forms take
approximately 10 to 20 min to complete. The child/adolescent
self-report form takes approximately 30 min to complete. For most
scales on the BASC questionnaires, a higher score is indicative of
pathology. The exception is the adaptation scale, where a lower
score is indicative of pathology.
Scoring of the BASC questionnaire
For this study, general and gender-appropriate T scores were
calculated. A T score tells the distance of a raw score from the
normal group’s mean raw scale in standard deviations. The
subscale scores for somatization, depression and anxiety from the
teacher, parent and child/adolescent self-report forms are reported.
At-risk status
According to the manual, BASC questionnaire T-subscale scores
for the problem subscales above 60 are considered ‘‘at-risk’’ scores
(i.e., significant problems that may require treatment but do not
indicate a formal diagnosis). Scores for somatization and depression above 70 and anxiety scores above 65 are considered clinically
significant (i.e., maladaptive behavior). However, analysis for this
study did not discriminate between ‘‘at-risk’’ and ‘‘clinically
significant’’ scores. Therefore, results are reported for children with
T scores above 60 whose status is referred to as ‘‘at-risk’’.
Reliability and validity
The 3 BASC forms have excellent reliability and validity (Hoza,
1994). Merenda (1996) reported that the coefficients of internal
53
consistency of the BASC questionnaire were excellent. The
internal consistency scores of the teacher and parent forms average
above 0.80 and the self-report forms average 0.80 according to the
manual.
Data analysis
Repeated-measures ANOVA was used to evaluate for differences
in somatization, anxiety and depression scores among parents,
teachers and the children/adolescents themselves. Pearson product
moment correlation coefficients were used to examine the correlations between teacher, parent and child/adolescent ratings of somatization, anxiety and depression. Percent agreement and Cohen’s ␬ were
used to compare the percentage of children with cancer who were ‘‘at
risk’’ according to somatization, depression and anxiety scores among
the teachers’, parents’ and child/adolescents’ ratings. ␹2 analysis was
performed to determine if age, gender, treatment status or cranial
radiation status had an effect on the somatization, depression or
anxiety subscale scores of the children/adolescents with cancer. A p
value of ⬍0.05 was considered statistically significant.
RESULTS
Demographic data
Table I provides a summary of the characteristics of the
children/adolescents who participated in this study. The majority
(60%) were female. Figure 1 includes a frequency of age and
gender for the sample. Almost 3/4 were Caucasian.
The majority of the children/adolescents were from a 2-parent
household, and the commonest diagnosis by far was ALL. Most of
the children/adolescents did not receive cranial radiation. Approximately half were undergoing therapy and the rest had completed
treatment. More than two-thirds of the children/adolescents were
from UCSF. All parent report forms were completed by mothers
except for 1 father and 1 grandmother.
Comparisons and correlations
Comparison of teacher, parent and child/adolescent somatization, depression and anxiety subscale scores. A 1-way repeatedmeasures ANOVA was performed, and significant differences were
TABLE I – DESCRIPTIVE CHARACTERISTICS OF THE SAMPLE (n ⫽ 43)
Age: median (range)
Gender (M:F)
Ethnicity
Caucasian
African American
Mixed
Filipino
Hispanic
Asian
Marital status of parents
Married
Single
Unknown
Cancer diagnosis
Acute lymphoblastic leukemia
Wilms’ tumor
Acute non-lymphoblastic leukemia
Rhabdomyosarcoma
Lymphomatous leukemia
Cranial radiation
Yes
No
Therapy status
On therapy
Off therapy
Sample by collection site
UCSF1
University of Arizona
LPCH at Stanford2
9 years (6–14 years)
17:26
32 (74.4%)
1 (2.3%)
2 (4.7%)
1 (2.3%)
6 (13.9%)
1 (2.3%)
26 (60%)
14 (33%)
3 (7%)
38 (89%)
1 (2%)
1 (2%)
1 (2%)
2 (5%)
9 (21%)
34 (79%)
24 (56%)
19 (44%)
29 (68%)
7 (16%)
7 (16%)
1University of California at San Francisco.–2Lucille Salter Packer
Children’s Hospital.
CHALLINOR ET AL.
54
TABLE III – PEARSON PRODUCT MOMENT CORRELATIONS AMONG THE
TEACHER, PARENT AND CHILDREN/ADOLESCENT SUBSCALE SCORES
Parent
Child/adolescent
(n ⫽ 13)
Teacher
r ⫽ 0.50 (p ⫽ 0.082)
Parent
—
Depression (n ⫽ 32)
Teacher
r ⫽ 0.52 (p ⫽ 0.003)
Parent
—
Anxiety (n ⫽ 30)
Teacher
r ⫽ 0.56 (p ⫽ 0.001)
Parent
—
Somatization1
r ⫽ ⫺0.02 (p ⫽ 0.955)
r ⫽ 0.02 (p ⫽ 0.959)
r ⫽ 0.62 (p ⬍ 0.0005)
r ⫽ 0.52 (p ⫽ 0.002)
r ⫽ 0.23 (p ⫽ 0.227)
r ⫽ 0.39 (p ⫽ 0.031)
1Only adolescents have a somatization subscale on the self-report
form.
FIGURE 1 – Frequency distribution of the age and gender of the
sample (n ⫽ 43).
found among the 3 respondent groups in the depression scores
(Table II). Post hoc contrasts, using the Bonferroni criteria,
revealed that parents reported significantly higher depression
scores for children/adolescents with cancer compared with the
teachers and the children/adolescents themselves. In addition,
significant differences were found in the anxiety scores. Parents
reported significantly higher anxiety for their children with cancer
than did the teachers. A similar pattern was noted for the
somatization scores (not included on the child self-report form),
though the results were not statistically significant.
Correlation among the respondents’ subscale scores
Pearson product moment correlation coefficients were calculated
by subscales (i.e., somatization, depression and anxiety) for the
respondent groups. Table III lists the results. Teachers’ and parents’
scores were significantly positively correlated for anxiety and
depression subscales, but there was no significant correlation for
the somatization subscale. There was a significant positive correlation between parents’ and children/adolescents’ ratings for anxiety
and depression subscales, but there was no significant correlation
for the somatization subscale. Teachers’ and children/adolescents’
scores were significantly positively correlated for the depression
subscale, but no significant correlation was found for the anxiety or
somatization subscales.
Correlation among the somatization, depression
and anxiety subscale scores
Pearson product moment correlation coefficients were calculated
by respondent groups for the somatization, depression and anxiety
subscale scores. Results are summarized in Table IV. Significant
positive correlations were found for all of the subscale scores for
each of the 3 groups (i.e., teachers, parents and children/
adolescents).
At-risk analyses
Analysis of percentage of agreement between teacher, parent and
children/adolescent ratings of somatization, depression and anxiety subscale T scores that are considered at-risk scores Scores for
the somatization, depression and anxiety subscales were dichotomized into ‘‘not at risk’’ and ‘‘at risk’’ categories. Subjects with
scores ⬍60 are considered not at risk; those with scores ⱖ61 are
TABLE IV – PEARSON PRODUCT MOMENT CORRELATIONS FOR
SOMATIZATION, DEPRESSION AND ANXIETY SUBSCALE T SCORES FOR
TEACHER REPORT, PARENT REPORT AND CHILD/ADOLESCENT SELF-REPORT
Somatization
Depression
(n ⫽ 42)
Anxiety
r ⫽ 0.52 (p ⬍ 0.0005)
Depression
r ⫽ 0.35 (p ⫽ 0.021)
Parent (n ⫽ 43)
Anxiety
r ⫽ 0.36 (p ⫽ 0.018)
Depression
r ⫽ 0.31 (p ⫽ 0.042)
Children/adolescents2 (n ⫽ 30)
Anxiety
Teacher1
r ⫽ 0.53 (p ⬍ 0.0005)
—
r ⫽ 0.55 (p ⬍ 0.0005)
—
r ⫽ 0.63 (p ⬍ 0.0005)
1One respondent had missing data for this item.–2Children 6–7 years
of age do not have a self-report form, only adolescents have a
somatization subscale on the self-report form and 1 respondent had
missing data for this item.
considered at risk. Table V provides the percentages of children/
adolescents who are at risk based on the respondents’ scores. For
each of the 3 subscales (i.e., somatization, depression and anxiety),
the agreement between parents and children/adolescents, between
teachers and parents and between teachers and children/adolescents
was measured on the dichotomous risk variables. Results are
included in Table VI.
Somatization subscale
As shown in Table VI, cross-tabulations were performed for
teacher, parent and adolescent scores and no statistically significant
agreement between the respondent groups was found regarding
children with at-risk scores on the somatization subscale.
Depression subscale
As shown in Table VI, cross-tabulations demonstrated significant agreement between the teachers’ and the parents’ ratings of
depression in children/adolescents with cancer. Also significant
were the levels of agreement between the teachers and the
children/adolescents and between the parents and the children/
adolescents on ratings of depression
Anxiety subscales
As shown in Table VI, no significant level of agreement was
found between the respondent groups for children/adolescents with
anxiety scores considered at risk.
TABLE II – DIFFERENCES IN TEACHER, PARENT AND CHILD/ADOLESCENT SUBSCALE T SCORES FOR SOMATIZATION,
DEPRESSION AND ANXIETY
Subscales
Teacher
mean (SD)
Parent
mean (SD)
Child/adol.
mean (SD)
Statistic
F
p
value
Somatization (n ⫽ 13)1
Depression (n ⫽ 32)2
Anxiety (n ⫽ 30)3
63.85 (20.94)
48.91 (7.81)
51.50 (9.37)
65.31 (12.39)
55.59 (13.84)
56.20 (11.49)
53.85 (13.78)
49.28 (10.86)
50.47 (11.25)
2.32
7.38
3.99
0.120
0.001
0.024
1The somatization subscale is not included in the child self-report form.–2Children 6–7 years of age do
not have a self-report form.–3One respondent had missing data for this item.
SAD MEASURES OF HRQL
55
TABLE V – PERCENTAGE OF CHILDREN/ADOLESCENTS WITH CANCER WHO WERE RATED BY TEACHERS, PARENTS
OR THEMSELVES AS HAVING SOMATIZATION, DEPRESSION AND ANXIETY SUBSCALE SCORES THAT ARE
CONSIDERED AT RISK
Respondents
Percentage of children/adolescents
Somatization
Depression
Anxiety
Teacher
37.2%
11.6%
11.6%
95% CI (0.23 ⬍ p ⬍ 0.52) 95% CI (0.02 ⬍ p ⬍ 0.21) 95% CI (0.02 ⬍ p ⬍ 0.21)
(n ⫽ 43)
(n ⫽ 43)
(n ⫽ 42)1
Parents
46.5%
20.9%
27.9%
95% CI (0.32 ⬍ p ⬍ 0.61) 95% CI (0.09 ⬍ p ⬍ 0.33) 95% CI (0.14 ⬍ p ⬍ 0.41)
(n ⫽ 43)
(n ⫽ 43)
(n ⫽ 43)
Children/adolescents
30.8%
18.7%
32.3%
95% CI (0.06 ⬍ p ⬍ 0.56) 95% CI (0.05 ⬍ p ⬍ 0.32) 95% CI (0.16 ⬍ p ⬍ 0.49)
2
3
(n ⫽ 32)
(n ⫽ 31)4
(n ⫽ 13)
1One respondent had missing data for this item.–2The somatization subscale is not included in the child
self-report form.–3Children 6–7 years of age do not have a self-report form.–4One respondent had missing
data for this item.
TABLE VI – PERCENTAGE OF AGREEMENT BETWEEN TEACHER, PARENT AND
CHILD/ADOLESCENT RATINGS OF SOMATIZATION, DEPRESSION AND
ANXIETY SUBSCALE T SCORES FOR NORMAL OR AT-RISK STATUS
Parent
Child/adolescent
Total agreement 63%
␬ 0.2423
p ⫽ 0.11
—
Total agreement 53%
␬ 0.0488
p ⫽ 0.85
Total agreement 46%
␬ 0.0619
p ⫽ 0.76
Total agreement 81%
␬ 0.3281
p ⫽ 0.02
—
Total agreement 90%
␬ 0.6191
p ⫽ 0.05
Total agreement 85%
␬ 0.5181
p ⬍ 0.005
Somatization1
Teacher
Parent
Depression
Teacher
Parent
Anxiety
Teacher
Parent
Total agreement 69%
␬ 0.0808
p ⫽ 0.55
—
Total agreement 67%
␬ 0.1177
p ⫽ 0.45
Total agreement 68%
␬ 0.2619
p ⫽ 0.14
1Only adolescents have a somatization subscale on the self-report
form.
Association between age, gender, cranial radiation status,
treatment status and subscale T scores
␹2 analyses were performed to determine if age, gender, treatment status or cranial radiation status had an influence on the
somatization, depression and anxiety subscale scores of the children/
adolescents who had at-risk scores. Age was the only variable
found to have a significant influence on the anxiety scores. Twice as
many adolescents (n ⫽ 8/13) compared to children (n ⫽ 4/30) were
scored by parents as having at-risk anxiety scores (Fisher’s exact
test, 2-tailed ⬎ 0.0005).
Analysis of the somatization subscale of the adolescent
self-report form
The somatization subscale (only on the adolescent self-report
form) includes 11 items, 3 of which are of particular interest when
evaluating children/adolescents with cancer: ‘‘I am a healthy
person’’, ‘‘I am afraid I have cancer’’ and ‘‘Other people are
healthier than I am’’. Adolescents receiving therapy for cancer
might be expected to answer ‘‘true’’ to all 3 of these items since
they are receiving treatment for their disease and, therefore
logically, other people are healthier than they are. Seven of the 13
adolescents surveyed were on therapy for cancer. Yet all 7 believed
they were ‘‘healthy’’ and only 2 were afraid they had cancer; 3 did
not believe that others were healthier than they were. This analysis
may explain why the adolescents’ somatization subscale scores
showed no significant differences compared to the normative data
for this subscale (t ⫽ 1.01, p ⫽ 0.334).
The 6 adolescents who had completed therapy did not have the
same responses to the 3 questions listed above. Only 3 of the
survivors believed they were healthy and 5 of them thought that
others were healthier than they were. Two were afraid they had
cancer. It is interesting to note that, although these adolescents had
completed their therapy, more adolescents in this cohort believed
that others were healthier than was true of the adolescents who
were continuing on therapy. It is also of interest that only half the
adolescents who had completed therapy believed they were healthy
in comparison to this self-assessment by all of the adolescents who
were on active treatment.
DISCUSSION
This study evaluates the HRQL of children/adolescents with
cancer using measures of somatization, depression and anxiety as
reported by teachers, parents and the children/adolescents themselves. The generalizability of the study findings is enhanced
because this is a diverse sample of children/adolescents undergoing
therapy for cancer and early survivors that was obtained from 3
tertiary-care medical centers in 2 states. Our observations are in
agreement with the work of Worchel et al. (1988), who found that
parents of children with cancer reported higher levels of depression
in their children than did the children themselves. Parents may
experience personal stress related to the crisis of their child’s
cancer diagnosis and treatment that could influence their assessments of children’s level of depression or anxiety. Brown et al.
(1992) found evidence of anxiety and depressive symptoms in the
fathers of children who had been on treatment for cancer for 1 year.
One might expect that these symptoms could be projected to their
children. However, Watson et al. (1999) found no significant
impact of parents’ mental health on rating of their child’s HRQL in
a study of 90 parents of children with cancer both on and off
treatment. An alternative hypothesis to explain the differences
between parents’ and teachers’ ratings of depression may be that
children/adolescents who return home after a school day may be
more depressed when the distraction of the classroom and schoolmates is absent, in which case the parents’ reports could be
accurate.
Significant differences were found in teachers’ and parents’
ratings of anxiety, with parents reporting higher levels of anxiety. It
would be reasonable to expect that the parent of a child undergoing
therapy for cancer would be in a highly anxious state and that
parents whose children have recently completed therapy may
experience anxiety related to the possibility of a relapse. Other
researchers (e.g., Brown et al., 1992) found that a significant
percentage of mothers of children who had been on therapy for
cancer (34%) were classified as anxious by their own reports.
56
CHALLINOR ET AL.
Again, parents’ anxiety ratings of their children may reflect their
own heightened anxiety (Eiser and Jenney, 1996). However, it is
also possible that children/adolescents are more anxious at home
than at school, where they experience the diversion of the school
environment and, therefore, the parents’ ratings may be accurate.
The significant high, positive correlations for teachers’ and parents’
ratings for anxiety and depression denote that these behaviors may
be more obvious than somatization, for which no significant
correlation was found. Similar significantly positive correlations
for parents’ and children/adolescents’ ratings for anxiety and
depression indicate that these 2 behaviors, as observed by the
parents, may be more illustrative of the children/adolescents’
self-reported state than somatization, for which no significant
correlation was found. Worchel et al. (1988) did not find a
significant correlation between parents’ scores for depression on
the Child Behavior Checklist (CBCL) and children’s self-report on
the Children’s Depression Inventory. However, these investigators
did find that parents’ and nurses’ ratings of depression were
significantly correlated, an observation similar to the parents’ and
teachers’ correlations for depression scores in this study.
It is of note that teachers’ and children/adolescents’ scores were
significantly positively correlated only for the depression subscale.
It may be that children/adolescents’ anxiety and somatization are
not revealed by behavioral characteristics that are readily apparent
to teachers. However, depressive behavior may be more obvious to
even a busy teacher; hence, the significant positive correlation
between teachers’ and children/adolescents ratings of depression.
The highly positive correlations between the somatization,
depression and anxiety subscales on teachers’ and parents’ reports
indicate that children who exhibit any one of these symptoms
should be evaluated for the other 2. Although 1 study found that
children/adolescents with cancer did not have increased rates of
depression compared to a control group (Noll et al., 1993), it is
important to consider that those children/adolescents who have
increased levels of somatization or anxiety may also be depressed.
In fact, Tebbi et al. (1988), in a study of adolescents with cancer,
found that somatic symptoms may be more conspicuous than the
psychological symptoms of depression.
The percentage of children/adolescents who had somatization
scores in the at-risk range as reported by all of the respondents in
this study is similar to findings described by Mulhern et al. (1989),
who found statistically significant increases (17% to 33% compared to the 7% expected) in the proportions of children who were
cancer survivors who had ‘‘clinically elevated’’ scores on the
CBCL (i.e., 1.5 SD from the normative mean). In particular, these
children had elevated scores for somatization by parental report.
Our results contrast with those of previous researchers who
found no differences in somatization scores (on the CBCL) from
mothers whose children had cancer and mothers of the control
group (Sawyer et al., 1995). In fact, in that study, the children with
cancer who were 11 to 16 years old and their mothers reported
anxiety/depression scores that were lower than the control group.
Other researchers have found no difference in levels of anxiety
between children with cancer compared with healthy controls using
the Revised Children’s Manifest Anxiety Scale (Sloper et al.,
1994).
Lack of significant agreement between teachers, parents and
children/adolescents regarding the somatization and anxiety scores,
in contrast to scores for depression for the children/adolescents in
this study, suggests that depressive behavior may be easier for
individuals to observe. Children may exhibit less somatization at
school than they do at home. Another explanation may be that the
items on the BASC questionnaires for somatization and anxiety
(which are not identical on all forms) may not be reliable measures
of somatization or anxiety for children with a chronic illness such
as cancer.
Verhulst and van der Ende (1992) found that, in the general
population, adolescents reported a greater number of problems
(particularly anxiety/depression and somatization) than did their
parents when using the CBCL. The researchers hypothesized that
the increasing physical and psychological independence of adolescents may make parents’ reports of observable behavior and
internal concerns of their adolescent children unreliable. Likewise,
others have reported a low correlation between self-reports of
adolescents with cancer and their parents’ reports of behavioral
problems and the impact of the illness on school and social
activities (Sawyer et al., 1999). In addition, other investigators
have suggested that children/adolescents with cancer or other
chronic illnesses may have adaptation styles that mask distress and,
therefore, assessment by multiple respondents regarding behavior
is important (Canning et al., 1992).
Assessment of HRQL using indicators such as somatization,
depression and anxiety has produced conflicting results. It is
difficult to determine which study results reflect the reality for the
general population of children/adolescents with cancer. However,
clinicians must remain cognizant that it is the individual child/
adolescent being treated and it is his/her personal HRQL that is of
paramount importance. Therefore, behavioral screening using
multiple respondents to identify HRQL problems such as somatization, depression and anxiety is prudent.
With respect to the impact of age, it is possible that parents, in
general, perceive adolescents as more anxious than children,
whether or not they have cancer. Also, it may be that adolescents
display increased anxious behavior while enduring the stress of a
major developmental transition. This finding is in contrast with that
of other investigators who found that mothers of children with
cancer reported significantly higher scores for anxiety/depression
compared to a control group but no difference for adolescents
compared to a control group (Sawyer et al., 1995).
As with the findings in the present study, Mulhern et al. (1989)
found no effects of cranial radiation or gender on the behavior
problems of childhood cancer survivors using the CBCL, which
includes scores for somatization and anxiety/depression.
In contrast, Sanger et al. (1991), who studied children with
cancer, found that boys had an increased rate of problems
compared to girls on 2 or more scales of the Personality Inventory
for Children. In addition, others have found that age had a
significant effect on association with increased somatic complaints
in cancer survivors, with adolescents scoring higher than children
(Mulhern et al., 1989).
It is possible that the small sample size of our study limited the
ability to detect significant effects for age, gender, cranial radiation
or treatment status on teachers’ or children/adolescents’ self-reports
for the 3 subscales or of parental reports for somatization and
depression. Furthermore, the small sample size limits the generalizability of the study findings, as does the distribution of diseases
(with almost 90% of the sample having ALL). Although 3 sites
contributed to the final sample, recruitment was difficult due to the
need to collect data during the school year (which limited data
collection from teachers), the language diversity of patient populations, relapses (which suspended school attendance) and the young
age at diagnosis of many of the children who were not enrolled in
school. Another limitation is that the BASC may not provide a
comprehensive evaluation of HRQL of children/adolescents with
cancer. Some researchers have raised concerns about using behavioral instruments such as the CBCL in populations of children with
chronic illnesses and cite possible bias in regard to physical
symptoms, limited sensitivity to the severity of behavioral problems and subjectivity of scoring by observers (Perrin et al., 1991).
Nevertheless, behavioral questionnaires, such as the BASC, which
include data from teachers’ and parents’ observations as well as
from children/adolescents’ self-report of ‘‘feelings, attitudes and
beliefs’’, can be useful to monitor HRQL of children with a chronic
illness such as cancer. However, clinicians must remain cognizant
that most standardized behavioral questionnaires for children were
not developed for use with a chronically ill population and so must
interpret results carefully.
SAD MEASURES OF HRQL
It appears that, in general, some children/adolescents in our
study did not have significant HRQL problems as measured by the
BASC questionnaires. With one exception, teachers, parents and
the children/adolescents themselves reported subscale scores that
were in agreement with normative data. However, the range of
scores on the 3 subscales provides evidence of the high burden of
morbidity in some children/adolescents.
The variables that may determine which children/adolescents
have at-risk scores remain to be investigated. Until such time as this
information is available for proactive intervention, it is important to
identify, as soon as possible, the individual children/adolescents
undergoing therapy for cancer and early survivors who are having
extreme HRQL problems to initiate appropriate interventions.
The HRQL of children/adolescents undergoing therapy for
cancer and early survivors is an important component of therapeutic success. A longitudinal measurement approach would allow the
57
health-care team to determine whether findings early in the course
of treatment are consistent over time or if predictable changes
occur over time that require intervention. The value of this
approach would be strengthened by the use of an instrument with
an abundance of population-based normative data such as the
BASC. A study that examined parents’ perceptions of their own
levels of somatization, depression and anxiety and compared the
results with children/adolescents’ self-reports would be helpful.
This might determine if the parents’ ratings for their children are
affected by their own status.
It is certainly reassuring that the HRQL of the majority of the
children/adolescents evaluated by the BASC questionnaire is
within the range of the normative data. However, those children/
adolescents who scored in the at-risk range on teacher, parent and
self-report forms for somatization, depression and anxiety deserve
the attention of the health team, family members and school
personnel to take measures to mitigate their troubled experience.
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