Psychosomatics 41:339-346, August 2000
© 2000 The Academy of Psychosomatic Medicine
Trauma Spectrum Adaptation
Somatic Symptoms in Long-Term Pediatric Cancer Survivors
Sarah J. Erickson, Ph.D., and
Hans Steiner, M.D.
Received June 17, 1999; revised October 22, 1999; accepted January 21, 2000. From the Department of Psychology, University of New Mexico, Albuquerque; and the Department of Psychiatry, Stanford University School of Medicine, Division of Child Psychiatry and Child Development, Stanford, California. Address reprint requests to Dr. Erickson, Logan Hall, Department of Psychology, University of New Mexico, Albuquerque, NM 87131–1161; email:erickson{at}unm.edu
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ABSTRACT
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The authors assessed somatic symptoms and the degree of association among somatic symptoms, global adjustment, trauma symptoms, and personality characteristics in long-term pediatric cancer survivors. Forty cancer survivors completed self-report questionnaires and clinical interviews. Participants' level of somatic symptoms fell between nonclinic and psychiatric populations. Somatic symptom scores correlated with general adjustment in the negative direction and with posttraumatic stress disorder (PTSD) scores in the positive direction. The majority of participants met at least partial current PTSD criteria. Because these survivors demonstrate a repressive adaptive style but endorse somatic symptoms, the latter may represent a method for detecting trauma-related distress in this population.
Key Words: Pediatric Cancer Survivors • Somatization • Trauma
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INTRODUCTION
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As a result of advances in pediatric oncology treatment, a large proportion of pediatric cancer patients will become pediatric cancer survivors. In fact, 80% of children currently diagnosed with cancer are predicted to be long-term survivors.1 Whereas medical and cognitive problems secondary to treatment are well documented and relatively consistent,2 psychological sequelae are less well explicated. Although there is evidence of general psychological adjustment in the majority of cancer survivors, most empirical studies document psychological impairment in a significant subset of survivors.3–8 Thus far, studies have largely been unable to explain adequately difficulties in survivors' long-term adaptation. It is possible that reliance primarily on self-report measures of general psychological distress, such as concomitant anxiety and depression, does not adequately address the nature of survivors' adjustment.9
Trauma Spectrum Model and the Role of Somatic Symptoms
A range of trauma-related psychological distress has been empirically associated with exposure to extreme stress. Specifically, van der Kolk et al.10 found that exposure to extreme stress may result in a variety of combinations of symptoms over time, including symptoms characteristic of somatization, posttraumatic stress disorder (PTSD), dissociation, and affect dysregulation. In fact, these symptom clusters were highly intercorrelated in a sample of adult trauma survivors. Childhood trauma survivors had the highest level of symptoms across the trauma spectrum. The application of this trauma spectrum model to pediatric cancer survivors is yet to be determined, although a posttraumatic stress model for this population (focused on PTSD symptoms) has gained substantial clinical and empirical support. Specifically, prevalence rates of PTSD symptoms within pediatric cancer survivor samples have been consistent with other traumatized groups.11–14 However, when a comparison group was included in a large-scale study of pediatric cancer survivors, no statistically significant difference in PTSD prevalence rates was found.15
Somatic symptoms have been closely associated with PTSD and dissociation. A recent review of studies, integrating inconsistent findings, found evidence for a relationship between somatic symptoms and traumatic stress wherein physical symptoms were common after severe or recurrent traumatic stress.16 In fact, one study found that the principal complaint of 66% of natural disaster victims included physical symptoms.17 In addition, in a study of juvenile delinquent boys, somatization correlated significantly with PTSD symptoms.18 Another study found higher rates of somatization disorder in a community-based chronic PTSD adult sample.19
Similarly, the association between somatization and trauma appears empirically supported by samples of individuals with somatization disorder. In fact, the prevalence rate of abuse history in a sample of women with somatization disorder in a DSM-IV field trial was 90%.20 In addition, somatizing behavior appears to be more frequent in people from cultures that discourage emotional displays and instead support a focus on bodily symptoms.21
In addition to its link with traumatic stress in the form of somatization, somatic complaints in cancer survivors may reflect, at least in part, physiologically based symptoms because of the late effects of cancer treatment. They may also reflect hyponchondriacal or conversion symptoms, not unexpected in individuals who have experienced trauma. Keeping this in mind, we employ "somatic symptoms" as the general term to include all of these possibilities, regardless of their origin or purpose. We refer to the Somatization scale of the Symptom Checklist-90-Revised (SCL-90-R) as somatization where appropriate. We hypothesize that the long-term treatment of pediatric cancer may, therefore, lend itself to the reporting of somatic symptoms to the extent that the diagnosis and treatment are experienced as traumatic, encourage focus on bodily symptoms, and occur in a medical context that does not routinely address psychological experience.
This article reports on a small, comprehensive study of somatic symptoms and other trauma-spectrum symptoms in long-term pediatric cancer survivors. Symptoms characteristic of a trauma spectrum model were assessed to gain greater understanding of their absolute severity and the relationship of these variables to one another, with a particular focus on their relationship to somatic symptoms, in this population.
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METHODS
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Subjects
The study included 40 pediatric cancer survivors. We recruited English-speaking patients from a suburban children's hospital's long-term cancer survivor clinic. Clinic inclusion criteria required that all participants be in remission for at least 5 years. The patients constituted a heterogeneous group in regards to cancer diagnoses. Of 78 eligible patients identified through clinic recruitment, 40 (51%) subjects completed the study.
Participants ranged in age from 12 to 35 years (means±SD=20.4±7.8). The sample consisted of 26 females and 14 males. Race/ethnicity participant categories included the following: 22 (55%) Non-Hispanic Whites, 11 (28%) Hispanics, 3 (8%) Asian Americans, 1 (3%) African American, and 3 (8%) self-identified as "other." Educational attainment for the 25 adults in the sample (those older than 18 years) was 2.8 on a 1–4 scale (without high school (H.S.) diploma, H.S. graduate without college education, some college education, and degree from 4-year college or more). Written consent was obtained from all adult participants and parents of minor age participants. Written assent was obtained from all minor age participants.
Measures
All subjects completed self-report measures and two interviews. Somatic symptoms were assessed by the Somatization scale of the SCL-90-R. The Somatization scale is comprised of 12 (of 90) items. The SCL-90-R has been used to evaluate the psychological effects of cancer in adult patients, and it demonstrates adequate internal consistency and test-retest reliability in samples of adolescents and adults.22
A clinical interview with a licensed psychologist resulted in a Global Assessment of Functioning (GAF) score for each subject. DSM-III-R criteria of the 0–90 GAF scale were used to obtain a rating of current psychological, social, and occupational/school functioning.23 Psychometric properties of the instrument are described by its authors as adequate with evidence for moderate reliability (r= 0.61–0.91).24
In addition to the general clinical interview, all subjects completed the Structured Interview for PTSD (SI-PTSD).25 The SI-PTSD, which was administered by a licensed psychologist, includes both a rating of symptoms in the recent past and a rating of symptoms at their worst ever. It includes three subscales: intrusion, avoidance, and hyperarousal/miscellaneous symptoms. The SI-PTSD was initially developed with reference to the DSM-III26 criteria and has been modified slightly to accommodate DSM-III-R23 criteria. The interview demonstrates good test-retest reliability and diagnostic validity with respect to an independent Structured Clinical Interview for the DSM-III-R (SCID)(kappa=0.79). Good construct validity was shown with the Impact of Events Scale (IES) and a measure of combat exposure. Further psychometric testing was demonstrated with the DSM-III based interview version, but it has not been replicated with the DSM-III-R version.25
The Impact of Events Scale-Revised (IES-R),27 a self-report instrument that assesses the current severity of trauma-related symptoms, was employed as a measure of concurrent validity to the single-rater SI-PTSD interview. The IES-R includes 15 questions about subjects' distress related specifically to their "cancer experience." This measure contains intrusion and avoidance subscales. Reliability (split half r=0.86) and internal consistency of the subscales (intrusion alpha=0.78; avoidance alpha=0.82) were high in a sample of adults reporting a serious life event; and the IES has demonstrated discriminatory power between people who have experienced various levels of life-event severity.27 The correlation between the SI-PTSD and IES-R in our sample was 0.56 (P<0.001).
General personality functioning and social-emotional adjustment were assessed by the Weinberger Adjustment Inventory (WAI).28 This instrument contains 84 items with 10 subscales. Eight of the 10 subscales comprise two superordinate dimensions: distress (anxiety, depression, low self-esteem, and low well-being) and restraint (impulse control, suppression of aggression, consideration of others, and responsibility). Multitrait-multimethod analyses of self, teacher, and peer ratings provide support for convergent, discriminant, and predictive validity in adolescents and adults. In addition, across both adolescent and adult samples, the distress and restraint composite scales had internal consistencies of at least 0.91 and 0.85, respectively.28,29
Defensive style was assessed by the Response Evaluation Measure (REMY-71), a 71-item instrument that measures 21 individual defense mechanisms and three composite factors (immature, prosocial, and mature). The theoretical foundation for this scale, which originated as the DSQ-88, is the defense maturity model.30 It shows good reliability and congruent, discriminant, and predictive validity in both adolescent and adult samples.31
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RESULTS
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Because age at diagnosis, time since diagnosis, and current age were not associated with the variables of interest (somatic symptom scores, PTSD, GAF, WAI factors), we did not include them as covariates in the following analyses.
Somatic Symptoms
Results for this sample include a mean somatization score on the SCL-90-R of 0.55 (SD=0.63, median=0.33), a mean between the mean score for nonclinic patients (mean±SD=0.36±0.42) and psychiatric patients (mean±SD=0.87±0.75).22 The distribution of the somatization scores was positively skewed with the majority of participants in the nonclinical range.
General Adjustment and Somatic Symptoms
In addition to somatic symptoms, general adjustment was assessed through a clinical interview. The mean±SD GAF score was 71.72±13.31, with a range from 41 to 90. In addition, the SCL-90-R somatization score correlated with the GAF negatively and significantly (r=-0.39, P<0.05).
Trauma Symptoms
Trauma symptom results are more fully reported elsewhere,32 but some of the relevant descriptive data are presented here to illustrate the full range of trauma-spectrum symptoms this sample reported. Participants' mean score on the SI-PTSD was 10.51, with a range from 0 to 36 and a possible scale range from 0 to 76. All three PTSD categories, PTSD-positive, PTSD-partial, and PTSD-negative, were represented. Four out of 40 participants (10%) met current PTSD diagnostic criteria, with a cutoff score greater than 18 on the SI-PTSD. An additional 31 (78%) met partial PTSD criteria, meeting at least one PTSD symptom criterion (i.e., at least one symptom in the B, C, and/or D criteria) at a functionally significant level (score of at least 2=moderate severity). Of these 31 subjects, 12 (38%) met one criterion, 6 (19%) met two criteria, and 13 (42%) met at least three criteria at a functionally significant level. Only 5 subjects (13%) were PTSD-negative, meaning that no criterion was met at a functionally significant level. In addition, current and "worst ever" structured interview total PTSD scores were highly correlated (r=0.91, P<0.0001).
Trauma Symptoms and Somatic Symptoms
Both interview-based and self-report PTSD symptoms correlated with somatic symptom scores in the predicted direction (r=0.56, P<0.001; r=0.35, P<0.05, respectively). Somatic symptoms correlated more highly with avoidance than intrusion on the SI-PTSD (r=0.57, P<0.001; r=0.31, P<0.10, respectively), whereas somatic symptoms correlated more strongly with intrusion than avoidance on the IES-R (r=0.43, P<0.01; r=0.21, NS, respectively).
Personality Functioning Associated With Somatic Symptoms
Results of the WAI indicate that pediatric cancer survivors tend to endorse high levels of restraint (mean±SD=119.52±14.27, standard score=66) and low-to-average levels of distress (mean±SD=67.76±16.76, standard score=45). As components of these superordinate factors, subjects reported high levels of both impulse control and consideration for others (restraint) and mid-range levels of depression and anxiety (distress).32
Correlations between the SCL-90-R Somatization scale and WAI subscales reveal that somatization was negatively correlated with the superordinate restraint scale (r=-0.44, P<0.01) and its impluse control subscale (r= -0.42, P<0.01), and positively correlated with the depression (distress) subscale (r=-0.33, P<0.05).
REMY-71 immature, mature, and prosocial composite means, as well as all individual defense means, were compared to population means with no significant difference (composite means of 4.4, 5.9, and 3.5, respectively).31
Somatic symptom scores were significantly correlated with several individual defense mechanisms measured by the REMY-71. Specifically, somatic symptoms correlated with dissociation (r=0.41; P<0.05), splitting (r=0.39; P<0.05), and conversion (r=0.38; P<0.05). In addition, somatic symptoms correlated with both the Immature and Prosocial Defense composite factors in the positive direction (r=0.35, P<0.05; r=0.37, P<0.05, respectively).
Predicting Somatic Symptoms
In predicting SCL-90-R somatization scores from the three SI-PTSD subscales (Avoidance, Intrusion, Hyperarousal), the Depression and Anxiety subscales of the WAI, and the Immature factor of the REMY-71, the total somatization variance accounted for by the three instruments was 50% (F=4.12, P<0.01). No single predictor contributed a significant level of unique variance.
Reporting Discrepancy and Somatic Symptoms
Underreporting of general distress, defined as the discrepancy score between the structured interview of PTSD symptoms and self-report of distress symptoms (WAI distress scale), was uncorrelated with general, nontrauma symptoms of distress but correlated with trauma-spectrum phenomena. Specifically, underreporting of distress symptoms correlated positively with the REMY-71 denial defense and the SCL-90-R Somatization scale (the latter at a trend level) (r=0.49, P<0.01; r=0.33, P<0.10, respectively). Thus, whereas a trained clinician may recognize PTSD symptoms in an individual who does not report experiencing distress, distress appears to manifest in more primitive expressions of denial and somatic symptoms.
Comparison Between PTSD-Positive Subjects and PTSD-Partial and -Negative Subjects
Given these findings with our total sample, a comparison of the above-mentioned measures between PTSD positive subjects (N=4) and those who met partial criteria or were PTSD negative (N=36) was conducted. Results indicate that subjects who were PTSD positive reported more somatic symptoms than those who met partial criteria or who were PTSD negative (T=-3.02, P<0.05). In addition, as reported elsewhere,26 PTSD positive subjects reported greater distress and received significantly lower GAF scores than those who met partial criteria or were PTSD negative. In contrast, subjects who met partial PTSD criteria or who were PTSD negative reported greater restraint than PTSD-positive subjects.
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DISCUSSION
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Our study of long-term pediatric cancer survivors lends support to the trauma spectrum model of distress following pediatric cancer survival. Within this model, somatic symptoms may play an instrumental role in the presentation and subsequent detection of such distress. After at least 5 years off treatment, the relatively high levels of somatic and trauma-related symptoms in this small sample reflect the long-term impact of pediatric cancer.
Somatic symptom results for this sample include a mean between the mean score for nonclinic patients and psychiatric patients. Children with chronic illnesses, including cancer, have reported higher levels of somatic complaints than healthy peers on other measures of adjustment and behavioral problems.33,34 It is possible that somatic complaints in cancer survivors reflect true physical symptoms with physiological bases in cancer treatment and are not purely psychological in nature. However, the significance of somatic symptoms in this population is the role the symptoms play in indicating more general psychological distress: participants who report more somatic complaints also tend to report other types of nonphysiologically based trauma-related distress.
In terms of somatic symptoms serving as an indicator of more general distress, the SCL-90-R somatization score correlated with the GAF significantly in the negative direction, demonstrating that general adjustment declines as somatic symptom scores increase. Because the GAF scores were in the moderate-to-high range of functioning, with only a few subjects significantly impaired, somatic symptoms may be an indicator of distress in otherwise moderately functional individuals.
At 10%, the prevalence rate of PTSD in this sample is similar to the 12.5% rate of severe PTSD symptomatology found by Stuber et al.14 Although only 4 of 40 participants (10%) met current PTSD criteria, 31 (78%) met partial PTSD criteria, and only 5 subjects (13%) were PTSD negative. Thus, 35 of the 40 participants (88%) were currently experiencing significant, although not necessarily syndromal, symptomatology. Current age, age at diagnosis, and time since treatment completion were uncorrelated with the structured interview and self-report of PTSD scores.
In addition, somatic symptoms correlated positively with both interview-based and self-reported PTSD symptoms. The potential overlap of somatic symptoms and PTSD hyperarousal symptoms did not account for these correlations, as the correlation between somatic symptoms and hyperarousal was weaker than correlations for somatic symptoms and the other two subscales (Avoidance and Intrusion) with the PTSD interview; and hyperarousal symptoms were not included in the IES-R. Although somatic symptom scores correlated with both Intrusion and Avoidance subscales of both instruments, somatic symptom scores correlated more highly with the Avoidance subscale compared with the Intrusion subscale on the SI-PTSD and vice versa for the IES-R. Although a larger sample is needed to further explore this hypothesis, one possible explanation for the discrepancy may be that the method of assessing PTSD symptoms may determine the type of symptoms (avoidance vs. intrusion) most likely to be associated with somatic symptoms. Perhaps somatic symptoms are associated with a more public manifestation of trauma identified by the interviewer (avoidance), but a more private, subjective phenomenon reported by respondents (intrusion). Another explanation is that although the IES-R is often used in PTSD research, it has not been shown to map onto DSM-based criteria specifically and would, therefore, not be expected to demonstrate the same relationship with somatic symptoms.
Associated with somatic and PTSD symptoms, these cancer survivors report personality traits characteristic of a repressive adaptive style: high levels of restraint and a low level of reported distress. From an ego psychology model, this adaptive style is associated with an investment in others' positive valuation, an inability to express subjective distress, and a tendency to avoid disturbing affect and cognitions. This style has been documented at a higher prevalence rate in children who are currently undergoing cancer treatment.35 Given current scores on restraint and distress dimensions (mean scores in the range of 66% and 45%, respectively), an adaptation toward increased repressive adaptation observed during cancer treatment may continue years after treatment completion. Such a style may be beneficial in the short term (i.e., during treatment) but may include negative consequences in the long term.35 These WAI findings lend additional support to the trauma spectrum model in terms of difficulties in affect regulation.
It is within this context that the null results of difference between pediatric cancer survivors and peers on symptoms of posttraumatic stress and general distress must be interpreted.35,15 These findings may represent a lack of psychological awareness and subsequent reporting bias on the part of cancer survivors rather than an actual absence of symptom differences. Self-report data may, therefore, be biased toward underreporting affective distress. Interpreting this bias as a valid assessment of psychological health has significant consequences. As we see, this style of managing distress is associated with somatoform disorders and medical noncompliance,35 both because of a lack of psychological awareness.
Somatic symptoms were also significantly correlated with their associated defense composites and individual mechanisms: the Immature and Prosocial defense composites, and dissociation, splitting, and conversion. These findings support the application of the trauma spectrum model of PTSD, somatization, primitive defenses, and affect dysregulation to this population. In fact, somatic symptoms in cancer survivors, because they are more readily reported, may serve as indicators of other interrelated psychological difficulties.
In predicting SCL-90-R somatization scores from the three SI-PTSD subscales (Avoidance, Intrusion, Hyperarousal), the Depression and Anxiety subscales of the WAI, and the Immature factor of the REMY-71, the total somatization variance accounted for by the three instruments was 50%, with no single predictor contributing a significant level of unique variance. This suggests that the presence of somatic symptoms may represent the combination of trauma-specific symptoms and personality functioning.
The finding that underreporting of general distress was uncorrelated with other nontrauma, more general, symptoms of distress but correlated with denial and somatic symptoms, specific primitive defense reactions, suggests that whereas a trained observer may recognize PTSD symptoms in an individual who does not report anxiety, depression, and other distress phenomenon, distress appears to manifest in more primitive expressions of denial and somatic symptoms.
Finally, the results of comparisons between PTSD-positive subjects and those who met partial criteria or were PTSD negative suggests that subjects who were PTSD positive reported more somatic symptoms and greater distress and received significantly lower GAF scores than those who met partial criteria or who were PTSD-negative subjects. Whereas subjects who were PTSD positive reported greater distress, subjects who met partial PTSD criteria or who were PTSD negative reported greater restraint and defensiveness than PTSD-positive subjects. This set of findings suggests that meeting full PTSD criteria includes a breakdown of defenses wherein somatic symptoms and distress are acknowledged and reported.
If somatic symptoms, PTSD symptoms, and repressive adaptation in cancer survivors represent features of a more global adaptation to trauma, then psychiatric assessments and interventions need to address this. For example, if subjects are engaged in avoidance and a repressive adaptive style, then they are unlikely to be aware of, and therefore, report psychological distress. Hence, asking subjects about somatic complaints may be a method of addressing their distress within a comfortable arena.
Because participants were recruited from a follow-up clinic, they necessarily represent a selected sample of survivors. Clinic participation is limited to those survivors interested in and able to attend the clinic (i.e., those residing in relatively close proximity to the clinic, whose contact information is available, and who are willing to undergo a medical examination with a focus on treatment late-effects). Implications of such a selected sample include issues of representativeness and generalizability. It is important to note that those individuals who were recruited and eligible but did not participate in this study are probably more symptomatic than the actual participants. Although research on selective attrition has not been conducted with this population, other studies have documented that more distressed individuals are less likely to participate in research.36 Thus, the sample in our study, with heightened levels of somatic symptoms and trauma-related distress, most likely represents a relatively healthy subsample of the larger pediatric cancer survivor population.
Our study has several other limitations, including the study's small sample size (N=40), heterogeneity of participants, retrospective nature, failure to assess previous trauma history, and exclusion of difficult-to-recruit subjects. With respect to our sample's large age range, our aim was to assess somatic and traumatic symptoms in all survivors attending the follow-up clinic who were able to complete standardized assessment measures. Selected measures were standardized on both adolescent and adult samples. Because of our small sample size, we were unable to identify any developmental differences or trends. This represents an additional limitation. However, the results, along with other related studies, indicate the importance of a comprehensive prospective study with multiple assessment methodologies to determine the development of trauma-spectrum symptoms and their relationship to one another over the course of treatment and survival. For example, the type and number of traumas, elapsed time, and extent of trauma may predict specific symptom clusters that vary in a predictable fashion. Such a developmental sequencing of symptoms over time has been found in recently diagnosed children with insulin-dependent diabetes.37
A recent study identified risk factors for trauma symptoms in childhood cancer survivors including the following: retrospective subjective appraisal of life threat, the degree to which the experience was perceived as "scary" or "hard," current anxiety, limited social support, and history of other stressful life events.8 These risk factors are particularly salient because they are largely subjective in nature and include implications for intervention. An important research question is whether a psychological intervention at the time of diagnosis and/or during the initial medical treatment could prevent future trauma-related symptoms. In addition to risk factors for psychological distress, future research is also needed to understand predictors of successful adaptation.
In summary, long-term pediatric cancer survivors appear to exhibit somatic symptoms and other trauma-spectrum distress years after treatment completion. The vast majority of participants reported at least partial current PTSD symptoms and a repressive adaptive style including low levels of reported psychological distress and heightened levels of restraint. Somatic symptoms, because they appear to be a focus with which this population is comfortable, may represent an important area to initially assess as an indicator of other trauma-related distress.
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ACKNOWLEDGMENTS
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This research was supported by a National Institute of Mental Health (5 T32 MH19908–03) research fellowship to Dr. Erickson.
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REFERENCES
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R. B. Noll and M. J. Kupst
Commentary: The Psychological Impact of Pediatric Cancer Hardiness, the Exception or the Rule?
J. Pediatr. Psychol.,
October 1, 2007;
32(9):
1089 - 1098.
[Full Text]
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ABSTRACT
INTRODUCTION
