Somatization Anxiety and Depression in Children With Cancer

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SOMATIZATION, ANXIETY AND DEPRESSION AS MEASURES OF HEALTH-RELATED QUALITY OF LIFE OF CHILDREN/ADOLESCENTS WITH CANCER Julia M. CHALLINOR 1 *, Chri stine A. MIASKOWSKI 1 , Linda S. FRANCK 1 , Robert E. SLAUGHTER 1 , Katherine K. MATTHAY 1 , Robin F. KRAMER 1 , Janet J. VEATCH 1 , Steven M. PAUL 1 , Michael D. AMYLON 2 and Ida M. MOORE 3 1 Universit y of Californ ia, San Francisco , San Francisco, CA, USA 2  Lucile Salter Packard Children’s Hospital at Stanford, Stanford, CA, USA 3 Universit y of Arizona, Tucso n, AZ, USA T his d es criptive stud y of heal th-relat ed quality of life of ch ildren with can cer co mpared ch ildren/a dol escen ts’, par- ents’ and teachers’ rat ing s for somatiz ation, depress ion and an xiety to determine if there were s ig nica nt co rrelation s among resp ond ent s co res. In add ition, t he percentage of ag reement among res pon dents and s ig nican t dif ferenc es based on age, gender, use of cranial radiation and treatment s tat uswer e meas ured. Fort y-three children/adol es cen ts with ca nc er, cu rr ently receiv ing therapy for at leas t 1 year or who had completed therapy for no more t han 3 yea rs (excluding children who had receiv ed bone marr ow t rans plan ts or who ha d bra int umors ), were rec rui ted,with a parent an d teac he r, from 3 uni vers ity medical cen ter s. T he Beh avi oral Ass es s - ment Sy s tem fo r Chil dren qu es tionna ires for ch ild ren/ ado les cen ts, parents and teachers were us ed. Parents r e- ported a hig her level of depres s ion for the chil dren/adoles cents with can cer than did the teachers or the ch ildren/a dol es cen ts themselves. Parents repo rted a hig her leve l of an xiety for the ch ildren/a dole s cen ts than did the teachers . H ig h pos itive correlation s were fo un d among s co res from parents and teachers an d amon g s co res from pa rents and child ren/ adoles cents for t he anxiety and depress ion b ut not somatiz a- tion subscales. Children/adolescents and teachers had high, pos itively correlat ed sc ores only for the depress ion sub s cale. H ig h, pos itive correlations were fou nd between s omatiza- tion, anxi ety and depres s ion wit hin each grou p of res pon - den ts. A s ig nic ant percen tage of ag reement between all res pon den ts on rat ing sfor at-risk s tat uswasobtained onlyfor the depress ion s ubs cale. Age was the only variable found to have an in uenc e on s cores and only for t he anxiety s ubs cale. Int. J . Cance r Sup pl. 12:52–57, 199 9. 1999 Wiley-Liss, Inc. Current ly in the United States, 1 of every 475 children under the ag e of 15 ye arswill be di agnos ed wi th can cer(Bley er , 19 90 ). Tr eat me nt fo r ca nc er ca n last as lo ng as 3 ye ar s fo r ac ut e lymphoblas tic leukemi a (ALL) or be as short as a few months for a solid tumor. However, regardless of the specic 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. Measur es of HRQL evaluate the impact of a diseas e or treatme nt 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). Childr en/ado lescen ts under going cancer therap y experi ence marke d changes in their lives (e.g., schedules, health status, psychological well-being and family roles). Children/adolescents who survive cancer of ten do not retur n unmarked to a pre -disease st ate . However, the severi ty of late effe cts relate d 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 respon ses of the children thems elves can be enhanced by ques tion ing par ents and teac hers , who compar e a particul ar 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 childre n’s behavio r 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 Assess ment System for Childre n (BASC) ques- tionnai re is a 5-c omponent ass ess ment inst rument des igne d to mea sure the emotion al and beha vior al status of chil dren and adolescents ages 4 to 18 years (Reynolds and Kamphaus, 1992). The system includes separate questionnaires to be completed by the childre n’s teachers and parents and by the children /adolesc ents the mse lves . Items on the ques tionnai res incl ude pos itiv e and negativ e beha vior al obs erva tion s that are rate d by teac hers and paren ts as well as posit ive and negat ive feeli ngs and self- perceptions that are rated by the children/adolescents. Normative data for this ins trument were based on the responses of 2,4 01 teachers, 3,483 parents and 9,861 children from 90 geograp hically 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 subscal es measure somati za- tion, anxiety and depression and are important indicators of the childre n/adoles cents’ HRQL. These symptoms/pro blems 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 descriptiv e study of HRQL of children with cancer were (i) to compare somatization, depression and anxiety subsca le scores of the BASC questionna ire among respond ents (i.e., parents , teachers , children /adoles cents); (ii) to determine if Grant sponsor : Natio nal Cancer Inst itut e; Grant number: CA 7821 7; Grant sponsor: Oncology Nursing Society/Sigma Theta Tau. The contents of this public atio n are solely the respo nsib ilit y 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.  Int. J. Cancer: Supplement 12, 52–57 (1999) 1999 Wiley-Liss, Inc. Publication of the International UnionAgainst Cancer Publication de l’Union Internationale Contre le Cancer

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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. KRAMER

1

, Janet J. VEATCH

1

, Steven M. PAUL

1

, Michael D. AMYLON

2

and Ida M. MOORE

3

1University of California, San Francisco, San Francisco, CA, USA2 Lucile Salter Packard Children’s Hospital at Stanford, Stanford, CA, USA3University of Arizona, Tucson, AZ, USA

T his descriptive study of health-related quality of life ofchildren with cancer compared children/adolescents’, par-ents’ and teachers’ rat ings for somatization, depression andanxiety to determine if there were significant correlationsamong respondent scores. In addition, t he percentage ofagreement among respondents and significant differencesbased on age, gender, use of cranial radiation and treatmentstat uswer e measured. Fort y-three children/adolescents withcancer, curr ently receiving therapy for at least 1 year or whohad completed t herapy for no m ore t han 3 years (excludingchildren who had received bone marr ow t ransplants or who

had braint umors), were recruited,with a parent and teacher,from 3 university medical center s. T he Behavioral Assess-ment System for Children questionnaires for children/adolescents, parents and t eachers were used. Parents r e-ported a higher level of depression for the children/adolescentswith cancer than did the teachersor the children/adolescentsthemselves. Parents reported a higher level of anxiety for thechildren/adolescents than did the teachers. H igh positivecorrelations were found among scores from parents andteachers and among scores from parents and children/adolescents for the anxiety and depression but not somatiza-tion subscales. Children/adolescents and teachers had high,positively correlat ed scores only for the depression subscale.H igh, positive correlations were found between somatiza-tion, anxiety and depression wit hin each group of respon-dents. A significant percentage of agreement between allrespondents on ratingsfor at-risk stat uswasobtained onlyforthe depression subscale. Age was the only variable found to

have an influence on scores and only for t he anxiety subscale.Int. J. Cancer Suppl. 12:52–57, 1999.

1999 Wiley-Liss, Inc.

Currently in the United States, 1 of every 475 children under theage of 15 yearswill be diagnosed with cancer(Bleyer, 1990). Treatmentfor 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 includesurgery, chemotherapy, radiation therapy or a combination of thesemodalities. The health-related quality of life (HRQL) of children/ adolescents during cancer therapy as well as of the 65% of childrenwho 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 witha chronic illness, such as cancer, HRQL is an important criterionthat can be used to make patient management decisions and toevaluate the quality of health-care services (Fitzpatrick, 1993).Children/adolescents undergoing cancer therapy experience markedchanges in their lives (e.g., schedules, health status, psychologicalwell-being and family roles). Children/adolescents who survivecancer often do not return unmarked to a pre-disease state.However, the severity of late effects related to cancer and itstreatment varies according to the diagnosis and treatment regimenand other factors.

Researchers are in agreement that the choice of an appropriateinstrument 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 enhancedby questioning parents and teachers, who compare a particularchild/adolescent’s HRQL to that of other children/adolescents. Useof multiple respondents is particularly important when assessingthe 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 methodof 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 allowsthe researcher to make inferences about the children being studied(Sattler, 1992). Assessments of children’s behavior while on cancertherapy or following treatment of the disease allow the researcherto 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) ques-tionnaire is a 5-component assessment instrument designed tomeasure the emotional and behavioral status of children andadolescents ages 4 to 18 years (Reynolds and Kamphaus, 1992).The system includes separate questionnaires to be completed by thechildren’s teachers and parents and by the children/adolescentsthemselves. Items on the questionnaires include positive andnegative behavioral observations that are rated by teachers andparents as well as positive and negative feelings and self-perceptions that are rated by the children/adolescents. Normative

data for this instrument were based on the responses of 2,401teachers, 3,483 parents and 9,861 children from 90 geographicallydiverse sites in the United States and Canada. Three subscales of the questionnaires have particular importance for children with achronic illness such as cancer. These subscales measure somatiza-tion, anxiety and depression and are important indicators of thechildren/adolescents’ HRQL. These symptoms/problems occur inhealthy children as well as illness groups. Although in many wayschildren with cancer are similar to their healthy peers, they are atincreased risk for somatization, anxiety and depression.

The results reported here are part of a larger study that examinedthe general behavioral performance of children/adolescents withcancer and those who had been treated recently for cancer using theBASC questionnaires.

The purposes of this descriptive study of HRQL of children withcancer were (i) to compare somatization, depression and anxietysubscale 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 theauthors and do not necessarily represent the official views of the NationalCancer Institute.

*Correspondence to: Pediatrics Specialties Clinic, Box 0314 A 223, 400Parnassus Avenue, San Francisco, CA 94143, USA. Fax: 1–415–332–2582.

 Int. J. Cancer: Supplement 12, 52–57 (1999)

1999 Wiley-Liss, Inc.

Publication of the International UnionAgainst Cancer

Publication de l’Union Internationale Contre le Cancer

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there were significant correlations among respondent scores; (iii) todetermine if there were significant differences in the percentage of agreement among respondents who are considered ‘‘at risk’’ asdefined by the authors of the BASC (i.e., at least 1 SD above themean of the normative data); and (iv) to determine if there weresignificant differences based on age, gender, use of cranial radiationand treatment status in the percentage of children/adolescents withcancer who were rated ‘‘at risk’’.

MATERIAL AND METHODS

Setting

The study was based in 3 university medical centers: TheUniversity of California, San Francisco (UCSF), The Lucile SalterPackard Children’s Hospital at Stanford and the University of Arizona. The study was approved by the Human Subjects Commit-tee at all 3 centers.

Sample

Children were eligible to participate in the study if they met thefollowing criteria: (i) had a cancer diagnosis (excluding brain tumors asthese children have special problems), (ii) were between the ages of 6 and 16 years inclusive (for the present purposes, adolescents weredefined as the 12–14 year age group), (iii) were undergoing cancer

therapy for at least 1 year or had completed therapy for no morethan 3 years, (iv) were currently enrolled in school, (v) wereEnglish-speaking and (vi) were receiving cancer treatment involv-ing radiation and/or chemotherapy but not bone marrow transplant(children who receive bone marrow transplants do not return toschool for at least 1 year following transplant). One family refusedto participate and a second was not approached due to a stressfulsituation in the family at the time of the study. Of the 45 childrenwho were eligible to participate, only 1 was excluded a priori. Thesample consisted of 24 children who were undergoing therapy and19 children who had completed therapy (i.e., were off therapy forno more than 3 years) for a total sample of 43 children. A parent anda teacher of each child were recruited to participate in the study.

 Instrument 

The teacher, parent and child/adolescent self-report BASCquestionnaires were used in this study. The parent and teacherforms include 3 age levels (4–5, 6–11 and 12–18 years of age). Thechild/adolescent self-report form is divided into 2 age groups (6–11and 12–18 years of age). The parent and teacher forms takeapproximately 10 to 20 min to complete. The child/adolescentself-report form takes approximately 30 min to complete. For mostscales on the BASC questionnaires, a higher score is indicative of pathology. The exception is the adaptation scale, where a lowerscore is indicative of pathology.

Scoring of the BASC questionnaire

For this study, general and gender-appropriate T scores werecalculated. A T score tells the distance of a raw score from thenormal group’s mean raw scale in standard deviations. Thesubscale scores for somatization, depression and anxiety from theteacher, parent and child/adolescent self-report forms are reported.

 At-risk statusAccording 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 notindicate a formal diagnosis). Scores for somatization and depres-sion above 70 and anxiety scores above 65 are considered clinicallysignificant (i.e., maladaptive behavior). However, analysis for thisstudy did not discriminate between ‘‘at-risk’’ and ‘‘clinicallysignificant’’ scores. Therefore, results are reported for children withT 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

consistency of the BASC questionnaire were excellent. Theinternal consistency scores of the teacher and parent forms averageabove 0.80 and the self-report forms average 0.80 according to themanual.

 Data analysis

Repeated-measures ANOVA was used to evaluate for differencesin somatization, anxiety and depression scores among parents,

teachers and the children/adolescents themselves. Pearson productmoment correlation coefficients were used to examine the correla-tions between teacher, parent and child/adolescent ratings of somatiza-tion, anxiety and depression. Percent agreement and Cohen’s wereused to compare the percentage of children with cancer who were ‘‘atrisk’’ according to somatization, depression and anxiety scores amongthe teachers’, parents’ and child/adolescents’ ratings. 2 analysis wasperformed to determine if age, gender, treatment status or cranialradiation status had an effect on the somatization, depression oranxiety subscale scores of the children/adolescents with cancer. A pvalue of 0.05 was considered statistically significant.

RESULTS

  Demographic data

Table I provides a summary of the characteristics of thechildren/adolescents who participated in this study. The majority(60%) were female. Figure 1 includes a frequency of age andgender for the sample. Almost 3/4 were Caucasian.

The majority of the children/adolescents were from a 2-parenthousehold, and the commonest diagnosis by far was ALL. Most of the children/adolescents did not receive cranial radiation. Approxi-mately half were undergoing therapy and the rest had completedtreatment. More than two-thirds of the children/adolescents werefrom UCSF. All parent report forms were completed by mothersexcept for 1 father and 1 grandmother.

Comparisons and correlations

Comparison of teacher, parent and child/adolescent somatiza-tion, depression and anxiety subscale scores. A 1-way repeated-measures ANOVA was performed, and significant differences were

TABLE I – DESCRIPTIVE CHARACTERISTICS OF THE SAMPLE (n 43)

Age: median (range) 9 years (6–14 years)Gender (M:F) 17:26Ethnicity

Caucasian 32 (74.4%)African American 1 (2.3%)Mixed 2 (4.7%)Filipino 1 (2.3%)Hispanic 6 (13.9%)Asian 1 (2.3%)

Marital status of parentsMarried 26 (60%)Single 14 (33%)Unknown 3 (7%)

Cancer diagnosisAcute lymphoblastic leukemia 38 (89%)Wilms’ tumor 1 (2%)

Acute non-lymphoblastic leukemia 1 (2%)Rhabdomyosarcoma 1 (2%)Lymphomatous leukemia 2 (5%)

Cranial radiationYes 9 (21%)No 34 (79%)

Therapy statusOn therapy 24 (56%)Off therapy 19 (44%)

Sample by collection siteUCSF1 29 (68%)University of Arizona 7 (16%)LPCH at Stanford2 7 (16%)

1University of California at San Francisco.–2Lucille Salter PackerChildren’s Hospital.

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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 depressionscores for children/adolescents with cancer compared with theteachers and the children/adolescents themselves. In addition,

significant differences were found in the anxiety scores. Parentsreported significantly higher anxiety for their children with cancerthan did the teachers. A similar pattern was noted for thesomatization 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 calculatedby subscales (i.e., somatization, depression and anxiety) for therespondent groups. Table III lists the results. Teachers’ and parents’scores were significantly positively correlated for anxiety anddepression subscales, but there was no significant correlation forthe somatization subscale. There was a significant positive correla-tion between parents’ and children/adolescents’ ratings for anxietyand depression subscales, but there was no significant correlationfor 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 orsomatization subscales.

Correlation among the somatization, depressionand anxiety subscale scores

Pearson product moment correlation coefficients were calculatedby respondent groups for the somatization, depression and anxietysubscale scores. Results are summarized in Table IV. Significantpositive correlations were found for all of the subscale scores foreach 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 anxi-ety subscale T scores that are considered at-risk scores Scores for

the somatization, depression and anxiety subscales were dichoto-mized into ‘‘not at risk’’ and ‘‘at risk’’ categories. Subjects withscores 60 are considered not at risk; those with scores 61 are

considered at risk. Table V provides the percentages of children/ adolescents who are at risk based on the respondents’ scores. Foreach of the 3 subscales (i.e., somatization, depression and anxiety),the agreement between parents and children/adolescents, betweenteachers and parents and between teachers and children/adolescentswas measured on the dichotomous risk variables. Results areincluded in Table VI.

Somatization subscale

As shown in Table VI, cross-tabulations were performed forteacher, parent and adolescent scores and no statistically significantagreement between the respondent groups was found regardingchildren with at-risk scores on the somatization subscale.

  Depression subscale

As shown in Table VI, cross-tabulations demonstrated signifi-cant agreement between the teachers’ and the parents’ ratings of depression in children/adolescents with cancer. Also significantwere the levels of agreement between the teachers and thechildren/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 wasfound between the respondent groups for children/adolescents withanxiety scores considered at risk.

FIGURE 1 – Frequency distribution of the age and gender of thesample (n 43).

TABLE II – DIFFERENCES IN TEACHER, PARENTAND CHILD/ADOLESCENT SUBSCALE T SCORES FOR SOMATIZATION,DEPRESSIONAND ANXIETY

SubscalesTeacher

mean (SD)Parent

mean (SD)Child/adol.mean (SD)

StatisticF

 pvalue

Somatization (n 13)1 63.85 (20.94) 65.31 (12.39) 53.85 (13.78) 2.32 0.120Depression (n 32)2 48.91 (7.81) 55.59 (13.84) 49.28 (10.86) 7.38 0.001Anxiety (n 30)3 51.50 (9.37) 56.20 (11.49) 50.47 (11.25) 3.99 0.024

1The somatization subscale is not included in the child self-report form.–2Children 6–7 years of age donot have a self-report form.–3One respondent had missing data for this item.

TABLE III – PEARSON PRODUCT MOMENT CORRELATIONS AMONG THETEACHER, PARENTAND CHILDREN/ADOLESCENT SUBSCALE SCORES

Parent Child/adolescent

Somatization1 (n 13)Teacher r 0.50 ( p 0.082) r0.02 ( p 0.955)Parent — r 0.02 ( p 0.959)

Depression (n 32)Teacher r 0.52 ( p 0.003) r 0.62 ( p 0.0005)

Parent — r 0.52 ( p 0.002)Anxiety (n 30)

Teacher r 0.56 ( p 0.001) r 0.23 ( p 0.227)Parent — r 0.39 ( p 0.031)

1Only adolescents have a somatization subscale on the self-reportform.

TABLE IV – PEARSON PRODUCT MOMENT CORRELATIONS FORSOMATIZATION, DEPRESSION AND ANXIETY SUBSCALE T SCORES FOR

TEACHER REPORT, PARENT REPORTAND CHILD/ADOLESCENT SELF-REPORT

Somatization Depression

Teacher1 (n 42)Anxiety r 0.52 ( p 0.0005) r 0.53 ( p 0.0005)Depression r 0.35 ( p 0.021) —

Parent (n 43)Anxiety r 0.36 ( p 0.018) r 0.55 ( p 0.0005)Depression r 0.31 ( p 0.042) —

Children/adolescents2 (n 30)Anxiety r 0.63 ( p 0.0005)

1One respondent had missing data for this item.–2Children 6–7 yearsof age do not have a self-report form, only adolescents have asomatization subscale on the self-report form and 1 respondent hadmissing data for this item.

54 CHALLINOR ET AL.

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  Association between age, gender, cranial radiation status,treatment status and subscale T scores

2 analyses were performed to determine if age, gender, treat-ment status or cranial radiation status had an influence on thesomatization, depression and anxiety subscale scores of the children/ adolescents who had at-risk scores. Age was the only variablefound to have a significant influence on the anxiety scores. Twice asmany adolescents (n 8/13) compared to children (n 4/30) werescored by parents as having at-risk anxiety scores (Fisher’s exacttest, 2-tailed 0.0005).

 Analysis of the somatization subscale of the adolescent self-report form

The somatization subscale (only on the adolescent self-reportform) includes 11 items, 3 of which are of particular interest whenevaluating children/adolescents with cancer: ‘‘I am a healthyperson’’, ‘‘I am afraid I have cancer’’ and ‘‘Other people arehealthier than I am’’. Adolescents receiving therapy for cancermight be expected to answer ‘‘true’’ to all 3 of these items sincethey are receiving treatment for their disease and, thereforelogically, other people are healthier than they are. Seven of the 13adolescents surveyed were on therapy for cancer. Yet all 7 believedthey were ‘‘healthy’’ and only 2 were afraid they had cancer; 3 didnot believe that others were healthier than they were. This analysis

may explain why the adolescents’ somatization subscale scoresshowed no significant differences compared to the normative datafor this subscale (t 1.01, p 0.334).

The 6 adolescents who had completed therapy did not have thesame responses to the 3 questions listed above. Only 3 of the

survivors believed they were healthy and 5 of them thought thatothers were healthier than they were. Two were afraid they hadcancer. It is interesting to note that, although these adolescents hadcompleted their therapy, more adolescents in this cohort believedthat others were healthier than was true of the adolescents whowere continuing on therapy. It is also of interest that only half theadolescents who had completed therapy believed they were healthyin comparison to this self-assessment by all of the adolescents whowere on active treatment.

DISCUSSION

This study evaluates the HRQL of children/adolescents withcancer using measures of somatization, depression and anxiety asreported by teachers, parents and the children/adolescents them-selves. The generalizability of the study findings is enhanced

because this is a diverse sample of children/adolescents undergoingtherapy for cancer and early survivors that was obtained from 3tertiary-care medical centers in 2 states. Our observations are inagreement with the work of Worchel et al. (1988), who found thatparents of children with cancer reported higher levels of depressionin their children than did the children themselves. Parents mayexperience personal stress related to the crisis of their child’scancer diagnosis and treatment that could influence their assess-ments of children’s level of depression or anxiety. Brown et al.(1992) found evidence of anxiety and depressive symptoms in thefathers of children who had been on treatment for cancer for 1 year.One might expect that these symptoms could be projected to theirchildren. However, Watson et al. (1999) found no significantimpact of parents’mental health on rating of their child’s HRQL ina 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 thatchildren/adolescents who return home after a school day may bemore depressed when the distraction of the classroom and school-mates is absent, in which case the parents’ reports could beaccurate.

Significant differences were found in teachers’ and parents’ratings of anxiety, with parents reporting higher levels of anxiety. Itwould be reasonable to expect that the parent of a child undergoingtherapy for cancer would be in a highly anxious state and thatparents whose children have recently completed therapy mayexperience anxiety related to the possibility of a relapse. Otherresearchers (e.g., Brown et al., 1992) found that a significantpercentage of mothers of children who had been on therapy forcancer (34%) were classified as anxious by their own reports.

TABLE V – PERCENTAGE OF CHILDREN/ADOLESCENTS WITH CANCER WHO WERE RATED BY TEACHERS, PARENTSOR THEMSELVES AS HAVING SOMATIZATION, DEPRESSION AND ANXIETY SUBSCALE SCORES THATARE

CONSIDEREDAT RISK

RespondentsPercentage 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)(n 13)2 (n 32)3 (n 31)4

1One respondent had missing data for this item.–2The somatization subscale is not included in the childself-report form.–3Children 6–7 years of age do not have a self-report form.– 4One respondent had missingdata for this item.

TABLE VI – PERCENTAGE OF AGREEMENT BETWEEN TEACHER, PARENTANDCHILD/ADOLESCENT RATINGS OF SOMATIZATION, DEPRESSIONAND

ANXIETY SUBSCALE T SCORES FOR NO RMAL OR AT-RISK STATUS

Parent Child/adolescent

Somatization1

Teacher Total agreement 63% Total agreement 53%0.2423 0.0488 p 0.11 p 0.85

Parent — Total agreement 46%0.0619 p 0.76

DepressionTeacher Total agreement 81% Total agreement 90%

0.3281 0.6191 p 0.02 p 0.05

Parent — Total agreement 85%0.5181 p 0.005

AnxietyTeacher Total agreement 69% Total agreement 67%

0.0808 0.1177 p 0.55 p 0.45

Parent — Total agreement 68%0.2619 p 0.14

1Only adolescents have a somatization subscale on the self-reportform.

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Again, parents’ anxiety ratings of their children may reflect theirown heightened anxiety (Eiser and Jenney, 1996). However, it isalso possible that children/adolescents are more anxious at homethan at school, where they experience the diversion of the schoolenvironment 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 maybe more obvious than somatization, for which no significant

correlation was found. Similar significantly positive correlationsfor parents’ and children/adolescents’ ratings for anxiety anddepression indicate that these 2 behaviors, as observed by theparents, may be more illustrative of the children/adolescents’self-reported state than somatization, for which no significantcorrelation was found. Worchel et al. (1988) did not find asignificant correlation between parents’ scores for depression onthe Child Behavior Checklist (CBCL) and children’s self-report onthe Children’s Depression Inventory. However, these investigatorsdid find that parents’ and nurses’ ratings of depression weresignificantly correlated, an observation similar to the parents’ andteachers’ correlations for depression scores in this study.

It is of note that teachers’ and children/adolescents’ scores weresignificantly positively correlated only for the depression subscale.It may be that children/adolescents’ anxiety and somatization arenot revealed by behavioral characteristics that are readily apparent

to teachers. However, depressive behavior may be more obvious toeven a busy teacher; hence, the significant positive correlationbetween teachers’ and children/adolescents ratings of depression.

The highly positive correlations between the somatization,depression and anxiety subscales on teachers’ and parents’ reportsindicate that children who exhibit any one of these symptomsshould be evaluated for the other 2. Although 1 study found thatchildren/adolescents with cancer did not have increased rates of depression compared to a control group (Noll et al., 1993), it isimportant to consider that those children/adolescents who haveincreased 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 thepsychological symptoms of depression.

The percentage of children/adolescents who had somatizationscores in the at-risk range as reported by all of the respondents inthis study is similar to findings described by Mulhern et al. (1989),who found statistically significant increases (17% to 33% com-pared to the 7% expected) in the proportions of children who werecancer survivors who had ‘‘clinically elevated’’ scores on theCBCL (i.e., 1.5 SD from the normative mean). In particular, thesechildren had elevated scores for somatization by parental report.

Our results contrast with those of previous researchers whofound no differences in somatization scores (on the CBCL) frommothers whose children had cancer and mothers of the controlgroup (Sawyer et al., 1995). In fact, in that study, the children withcancer who were 11 to 16 years old and their mothers reportedanxiety/depression scores that were lower than the control group.Other researchers have found no difference in levels of anxietybetween children with cancer compared with healthy controls usingthe Revised Children’s Manifest Anxiety Scale (Sloper et al.,1994).

Lack of significant agreement between teachers, parents andchildren/adolescents regarding the somatization and anxiety scores,in contrast to scores for depression for the children/adolescents inthis study, suggests that depressive behavior may be easier forindividuals to observe. Children may exhibit less somatization atschool than they do at home. Another explanation may be that theitems on the BASC questionnaires for somatization and anxiety(which are not identical on all forms) may not be reliable measuresof somatization or anxiety for children with a chronic illness suchas cancer.

Verhulst and van der Ende (1992) found that, in the generalpopulation, adolescents reported a greater number of problems(particularly anxiety/depression and somatization) than did their

parents when using the CBCL. The researchers hypothesized thatthe increasing physical and psychological independence of adoles-cents may make parents’ reports of observable behavior andinternal 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 behavioralproblems and the impact of the illness on school and socialactivities (Sawyer et al., 1999). In addition, other investigators

have suggested that children/adolescents with cancer or otherchronic illnesses may have adaptation styles that mask distress and,therefore, assessment by multiple respondents regarding behavioris important (Canning et al., 1992).

Assessment of HRQL using indicators such as somatization,depression and anxiety has produced conflicting results. It isdifficult to determine which study results reflect the reality for thegeneral 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 usingmultiple respondents to identify HRQL problems such as somatiza-tion, depression and anxiety is prudent.

With respect to the impact of age, it is possible that parents, ingeneral, perceive adolescents as more anxious than children,

whether or not they have cancer. Also, it may be that adolescentsdisplay increased anxious behavior while enduring the stress of amajor developmental transition. This finding is in contrast with thatof other investigators who found that mothers of children withcancer reported significantly higher scores for anxiety/depressioncompared to a control group but no difference for adolescentscompared 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 behaviorproblems of childhood cancer survivors using the CBCL, whichincludes scores for somatization and anxiety/depression.

In contrast, Sanger et al. (1991), who studied children withcancer, found that boys had an increased rate of problemscompared to girls on 2 or more scales of the Personality Inventoryfor Children. In addition, others have found that age had asignificant 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 theability to detect significant effects for age, gender, cranial radiationor treatment status on teachers’ or children/adolescents’self-reportsfor the 3 subscales or of parental reports for somatization anddepression. Furthermore, the small sample size limits the generaliz-ability of the study findings, as does the distribution of diseases(with almost 90% of the sample having ALL). Although 3 sitescontributed to the final sample, recruitment was difficult due to theneed to collect data during the school year (which limited datacollection from teachers), the language diversity of patient popula-tions, relapses (which suspended school attendance) and the youngage at diagnosis of many of the children who were not enrolled inschool. Another limitation is that the BASC may not provide a

comprehensive evaluation of HRQL of children/adolescents withcancer. Some researchers have raised concerns about using behav-ioral instruments such as the CBCL in populations of children withchronic illnesses and cite possible bias in regard to physicalsymptoms, limited sensitivity to the severity of behavioral prob-lems and subjectivity of scoring by observers (Perrin et al., 1991).Nevertheless, behavioral questionnaires, such as the BASC, whichinclude data from teachers’ and parents’ observations as well asfrom children/adolescents’ self-report of ‘‘feelings, attitudes andbeliefs’’, can be useful to monitor HRQL of children with a chronicillness such as cancer. However, clinicians must remain cognizantthat most standardized behavioral questionnaires for children werenot developed for use with a chronically ill population and so mustinterpret results carefully.

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It appears that, in general, some children/adolescents in ourstudy did not have significant HRQL problems as measured by theBASC questionnaires. With one exception, teachers, parents andthe children/adolescents themselves reported subscale scores thatwere 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/adolescentshave at-risk scores remain to be investigated. Until such time as thisinformation is available for proactive intervention, it is important toidentify, as soon as possible, the individual children/adolescentsundergoing therapy for cancer and early survivors who are havingextreme HRQL problems to initiate appropriate interventions.

The HRQL of children/adolescents undergoing therapy forcancer and early survivors is an important component of therapeu-tic success. A longitudinal measurement approach would allow the

health-care team to determine whether findings early in the courseof treatment are consistent over time or if predictable changesoccur over time that require intervention. The value of thisapproach would be strengthened by the use of an instrument withan abundance of population-based normative data such as theBASC. A study that examined parents’ perceptions of their ownlevels of somatization, depression and anxiety and compared theresults with children/adolescents’ self-reports would be helpful.

This might determine if the parents’ ratings for their children areaffected by their own status.

It is certainly reassuring that the HRQL of the majority of thechildren/adolescents evaluated by the BASC questionnaire iswithin the range of the normative data. However, those children/ adolescents who scored in the at-risk range on teacher, parent andself-report forms for somatization, depression and anxiety deservethe attention of the health team, family members and schoolpersonnel to take measures to mitigate their troubled experience.

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