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© 2003 American Society for Clinical Oncology Utility of Routine Psychological Screening in the Childhood Cancer Survivor Clinic
From the David B. Perini Jr. Quality of Life Clinic, The Dana-Farber Cancer Institute, Boston, MA. Address reprint requests to Christopher J. Recklitis, PhD, Dana-Farber Cancer Institute, 44 Binney Street, Boston, MA 02115, email: christopher_recklitis{at}dfci.harvard.edu.
Purpose: This study examined the utility of routine psychologic screening in a childhood cancer survivor clinic by evaluating patient acceptance, comparing subjects’ symptoms to normative data, examining the utility of specific tests, and identifying risk factors associated with psychological distress. Methods: During their annual clinic visit, 101 adult survivors of childhood cancer (median age, 25 years) completed the Symptom Checklist 90 Revised (SCL-90), as well as the Short Form 36 (SF-36), Beck Depression Inventory (BDI), and one additional suicide question. Psychological distress was operationally defined according to the published SCL-90 clinical case rule, classifying subjects with a consistent pattern of symptom elevations as clinical cases. Results: The majority of subjects (80%) completed the screening in less than 30 minutes and reported little (15%) or no (84%) distress. Sixty-four percent believed it would help "very much" or "moderately" in getting to know them, and 35% thought it would help "slightly." On the SCL-90, 32 subjects (31.7%) had a positive screen, indicating significant psychological distress. All subjects with clinically significant symptoms on the BDI and SF-36 Mental Health Scale were cases on the SCL-90 (case-positive). Suicidal symptoms were reported in 13.9% of the sample, all of whom were SCL-90 cases. In a logistic regression model, subjects’ dissatisfaction with physical appearance, poor physical health, and treatment with cranial radiation were associated with psychological distress. Conclusion: Results demonstrate that routine psychological screening can be successfully integrated into the cancer survivor clinic and may be effective in identifying those survivors with significant distress who require further evaluation.
DRAMATIC IMPROVEMENTS in the survival rates for childhood cancer1 have resulted in larger cohorts of patients living into adulthood and increased concerns about their long-term well-being. Clinicians caring for survivors are interested in knowing how childhood cancer survivors have been affected by their treatments, what specific late effects survivors may present with, and how they should be assessed. In addition to medical late effects, there has been growing interest in psychological late effects, such as depression, anxiety, and learning disabilities.2–7 Several studies have reported that childhood cancer survivors have difficulties with anxiety, posttraumatic stress, and depression,5,8–12 although other studies have failed to demonstrate this.2,13–16 Discrepancies may be related to different measurement techniques and differences in patient age and treatments. Several investigators suggest the incidence of psychological late effects may increase with age as more demands are placed on maturing individuals or as coping styles change, underscoring the importance of screening childhood cancer survivors into adulthood.4,5,16,17 In primary care, the problem of identifying psychological distress has been addressed with screening programs, and investigations have shown the utility of such screening for depression18 and anxiety.19,20 In adult oncology, studies have demonstrated that psychological problems undetected in routine care can be detected with self-report checklists.21–23 The goal of this study was to examine the feasibility and utility of routine psychological screening in the childhood cancer survivor clinic. Specific objectives were to evaluate patient acceptance and burden, to compare symptom levels to normative data, and to evaluate the utility of specific tests. Depression and suicidal tendencies were a focus because of the seriousness of these symptoms and their positive response to appropriate therapies. In addition, depression can exacerbate or complicate medical conditions including some common in cancer survivors (eg, heart disease24). By identifying risk factors for psychologic distress, we hoped to better understand the relationship of disease and treatment to psychologic outcome and to develop more efficient screening techniques.
Participants Subjects were adult survivors of childhood cancer seen in the survivor clinic at a major cancer center. Eligible participants were English-speaking patients who were at least 18 years of age and for whom it had been at least 2 years since the completion of treatment. Clinic patients are routinely scheduled with a psychologist as part of their visit. To ensure appropriate follow-up, patients who declined this psychology visit (n = 5) were not eligible for the screening. Of 117 eligible subjects, 101 (86.3%) completed screening measures, and their data are reported here. Two individuals agreed to participate but failed to complete or return questionnaires. Reasons for nonparticipation included time constraints (n = 13) and cognitive impairment (n = 1). Subjects were 49 males and 52 females ages 18 to 64 years. Median age was 25.0 years; nine subjects were age 40 or older. Participants were 93% white, 5% Hispanic, 1% Asian, and 1% African-American. Age at cancer diagnosis ranged from birth to 20 years (median age, 10.0 years); 36 subjects were diagnosed before age 6 years. Table 1  lists the subjects’ demographic and treatment variables.
Procedure The study was introduced to eligible patients during routine scheduling. At the visit, a research assistant approached eligible patients with a letter informing them of the study aims, confidentiality, and risks and benefits of participation. Consenting subjects completed screening questionnaires before their medical appointments. Questionnaires were scored using commercially available software, and results were provided to the psychologist before his or her appointment with the patient. Research assistants collected treatment information from medical records and providers. A pediatric oncologist blind to the screening data conducted a limited chart review (problem list and physician notes from 2 prior years) for subjects reporting suicidal ideation or attempt. The study was approved by the institutional review board.
Measures The Short Form 36 (SF-36). The SF-3625 is a 36-item measure of health-related quality of life that generates subscores on eight subscales. The Physical Functioning, Role–Physical, General Health, and Bodily Pain subscales assess physical functioning; whereas the Vitality, Social Functioning, Role–Emotional, and Mental Health scales assess emotional and social well-being.26 The two summary scales, Physical Health Summary and Mental Health Summary, were also calculated. Higher SF-36 scores indicate better functioning. The Symptom Checklist 90 Revised (SCL-90). The SCL-9027 is a 90-item psychologic symptom checklist with nine symptom scales measuring common psychologic problems (Depression, Somatization, Obsessive-Compulsive, Interpersonal Sensitivity, Anxiety, Hostility, Phobic Anxiety, Paranoid Ideation, and Psychoticism) and a summary scale of overall distress, the Global Severity Index (GSI). Subjects receive a T-score (mean = 50, SD = 10) on each scale, with higher scores reflecting more distress. Reliability and validity of the SCL-90 have been demonstrated in a wide range of general medical, oncology, and psychiatric settings.28 The SCL-90 item concerning suicide, which was analyzed separately, asks subjects to rate, on a five-point scale from "Not at all" to "Extremely," how often they are bothered by "thoughts of ending your life." The Beck Depression Inventory (BDI). The BDI29 is a 21-item self-report measure assessing somatic, mood, and cognitive symptoms of depression. The recommended total cutoff score of 15 was used here.29 In addition, two items, one covering suicide and one asking about physical appearance concerns, were analyzed individually. The suicide item asks subjects to endorse one of following four statements indicating they (1) have no suicidal thoughts; (2) have suicidal thoughts, but "would never carry them out"; (3) would like to commit suicide; or (4) would commit suicide if they "had the chance." On the physical appearance item, subjects report if they (1) have no concerns about appearance changes; (2) are worried about looking "old or unattractive"; (3) believe permanent appearance changes make them look "unattractive"; or (4) believe they look "ugly." The Beck Scale for Suicidal Ideation (BSSI). The single BSSI30,31 item asking about lifetime incidence of suicide attempts was used.
Statistical Analyses
Subjects’ SF-36 transformed scores (ranging from 0 to 100) were calculated for the eight subscales, and scaled scores (mean = 50, SD = 10) were calculated for the Physical and Mental Health Summary scales. Four subjects did not receive summary scale scores because of missing data, although they did complete sufficient items to have other subscales calculated and included in analyses. The sample was compared with normative data on subjects ages 18 to 64 years (weighted means calculated from the appropriate age groupings),25 using independent samples t tests. Following published SF-36 guidelines,26,36 subjects were classified as having a physical limitation if their Physical Component Summary score was Appearance concern was defined as endorsement of any physical appearance concern on the BDI item, and cranial radiation was defined as any therapeutic radiation to part or all of the brain. Patients were defined as having a young age at diagnosis if they were diagnosed before the age of 6 years.
Univariate risk factors for a positive SCL-90 were analyzed using odds ratios and Fisher’s exact test (dichotomous variables) and the Mann-Whitney U test (continuous variables). Variables were examined as potential risk factors on the basis of previous observations suggesting an association with psychological functioning.5,8,9,15,37–40 To determine factors independently associated with a positive SCL-90, a logistic regression was performed. Five dichotomous variables—sex, young age at diagnosis, appearance concern, cranial radiation, and physical health limitation—and one continuous variable—age—were selected for inclusion in the model. As expected, the diagnosis variable (acute lymphoblastic leukemia [ALL] v other) was highly collinear with other terms (young age at diagnosis and cranial radiation) and was not used in developing the model. Cranial radiation and young age at diagnosis were included because these variables were hypothesized to comprise some or all of the increased risk found in ALL patients. The logistic model was developed on the 91 subjects who had complete data on all six variables using a forward stepwise procedure. The model converged after four iterations and contained three significant terms. Model diagnostics indicated adequate fit of the data (Hosmer-Lemeshow
Acceptability of Psychological Screening Of the 96 subjects who reported time for completion, 77 (80%) responded they were able to complete the screening in less than 30 minutes, 16 (17%) required up to 45 minutes, and three subjects (3%) required more than 45 minutes. When asked whether the screening had "bothered or upset" them, 81 (84%) of 96 subjects indicated no distress, 14 (15%) reported they were "slightly" bothered or distressed, and one subject reported being "very" distressed. When asked if they felt the survey would "help us to get to know you better," 60 (64%) of 94 subjects indicated it would help "very much" or "moderately," 33 (35%) of 92 felt it would help "slightly," and only one subject felt the screening would "not help at all."
Health-Related Quality of Life
Self-Report of Psychologic Symptoms The survivors as a group reported significant psychological symptoms on the SCL-90 compared with normative data (Table 3 ). Survivors had significant elevations on the Somatic Complaints (t = 3.37, P = .001), Obsessive-Compulsive (t = 2.86, P = .005), Interpersonal Sensitivity (t = 3.30, P = .001), Depression (t = 2.65, P = .009), and Psychoticism (t = 3.42, P = .001) scales. On the other four scales, survivors had slightly higher scores but the differences were not significant. Subjects as a group were also significantly elevated on the GSI, reflecting both the number and severity of symptoms endorsed (t = 2.13, P = .035).
When the SCL-90 case rule was used, 32 subjects (31.7%) had a positive screen, indicating they had endorsed significant psychological symptoms in more than one domain. This rate is similar to the 36.7% estimated case rate reported in a study of active adult cancer patients.34 On the GSI scale, 23 subjects (22.8%) had T-scores of 63 or greater, significantly more than the 10% that would be expected in normative samples (z = 2.47, P = .013). To determine whether the SCL-90 case rule identified all individuals with self-reported psychologic distress, the classification was compared with results from the other mental health measures. Of the 15 subjects classified as having a mental health problem on the SF-36, all 15 had a positive SCL-90 screen. On the BDI, 10 (10.2%) of 98 subjects who completed the measure met the clinical cutoff score,29 and each had a positive SCL-90 screen. Suicidal ideation and behaviors were evaluated by examining relevant items from the SCL-90 (n = 99), BDI (n = 98), and BSSI (n = 97). Of 101 subjects who completed at least one of these measures, 14 (eight females and six males; 13.9%) reported some suicidal symptoms. Eight subjects reported current suicidal ideation alone, five reported current ideation and past suicide attempt(s), and one subject reported a past attempt and no current ideation. Medical record review revealed there was no documentation about suicidal ideation or attempt for any of the 14 subjects. Two records, however, indicated the patients had a psychiatric diagnosis, and four records indicated some mental health treatment. All 14 subjects reporting suicidal symptoms were SCL-90 case-positive.
Risk Factors for Positive SCL-90 Screen
To better understand which factors were independently associated with a positive screen, a step-wise logistic regression was performed. Sex, appearance concern, cranial radiation, young age at diagnosis, physical limitation, and age were tested for inclusion in the model. The final model contained three significant terms: physical limitation, appearance concern, and cranial radiation treatment. Data in Table 4
The results demonstrate that routine psychological screening can be successfully integrated into the cancer survivor clinic. Subjects reported minimal burden and high acceptance of screening, and almost one third reported significant psychological distress. Risk factors for psychological distress included cranial radiation treatment, physical appearance concerns, and physical health problems. A higher than expected rate of suicidal ideation or previous attempt was detected. Although the need for psychological assessment and care for survivors is recognized,3,4,41–43 exactly how individual survivors should be assessed remains unclear. Research studies of survivors have used a variety of assessment methods, many of which are not suited for clinical settings. Projective testing and psychiatric interviews require lengthy examinations by trained interviewers,5,44–46 and epidemiological studies typically use abbreviated measures not intended for clinical decision making. In medical appointments, patients and doctors often lack time or willingness to discuss quality-of-life issues,47 and in mental health settings, studies consistently show that clinician interviews alone are too subjective and lack sensitivity to critical factors.19 Previous studies of adult cancer patients and survivors indicate that psychological conditions, including disorders with serious health implications, are routinely undiagnosed or underestimated without specialized assessments.22,23 The SCL-90 case rate in this sample (31.7%) was similar to the case rate found when an SCL-90 short form was used in a group of 30 recently diagnosed adult cancer patients (36.7%).34 This is surprising because a new cancer diagnosis often precipitates a crisis reaction, during which emotional distress might be expected to be highest. That survivors in this study displayed similar levels of psychological distress indicates they may have continued psychologic problems, even many years after their cancers have been successfully treated. Although no general psychological screening measures have been specifically validated in adult survivors of childhood cancer, the validity of the SCL-90 in adult patients with cancer32,33 and other medical disorders48,49 supports its use here. Validation studies with adult survivors of childhood cancer will now be necessary to determine how scales intended to measure psychological distress may be affected by late effects of treatment such as fatigue or learning disabilities. Additional research will also be needed to determine whether survivor screening is sensitive to the anxiety symptoms of posttraumatic stress disorder reported in recent survivor studies.5 There was considerable overlap between the SCL-90 and other measures. The BDI did not identify any subjects with depression not already identified by the SCL-90, and all patients identified with mental health problems on the SF-36 were similarly identified by the SCL-90. A significant proportion of subjects (13.9%) reported current and/or past suicidal symptoms compared with estimates of population-based rates of ideation between 3% and 5.6%.32,50 This excess of suicidal survivors is of great concern both because of the potential risk and because no clear indication of this risk was found in their medical records. All suicidal subjects were identified as SCL-90 case-positive, suggesting that the SCL-90 may be able to identify these subjects on the basis of overall distress. Nonetheless, given the critical import of suicidal symptoms, specific assessment of survivors’ present and past suicidal symptoms in this population is strongly recommended. The SCL-90 identified more patients as psychologically distressed than the BDI or SF-36. It is possible that this higher positive hit rate on the SCL-90 is a consequence of poor specificity and that the SF-36 and BDI are more accurate. This would be inconsistent with previous research showing the SCL-90 to have adequate specificity compared with diagnostic interview,33 and it is more likely this important difference results from the different content of the scales. With 90 items, the SCL-90 inquires about a wide range of psychological problems (eg, impulse control, interpersonal sensitivity, phobias, disorganized thinking, etc), whereas the BDI and SF-36 Mental Health scale are more restricted in scope. Nonetheless, both measures contributed important information not captured on the SCL-90. Both appearance concern on the BDI and physical limitation on the SF-36 had important associations with psychological distress. In the logistic model, dissatisfaction with appearance, poor physical health, and cranial radiation treatment were significant risk factors for psychological distress. This is consistent with previous studies showing that medical morbidity and physical deformity are associated with psychological maladjustment among cancer survivors.37,51 In this sample, cranial radiation was confounded with ALL diagnosis. It is possible that, in addition to a direct effect on psychologic functioning, cranial radiation functioned as an indicator for ALL and that something about these patients other than radiation exposure is associated with risk of psychological late effects. Cranial radiation, however, is associated with significant neuropsychologic problems38,39,52 that may interfere with social, education, and vocational adaptation, making a link with poor psychological adjustment not unexpected. As more recently treated ALL patients who did not receive cranial radiation mature to adulthood, it will be important to investigate this question more closely. It should be stressed that these risk factors were found in a single cohort with a particular mix of diagnoses, so generalizability to other samples must not be assumed. Even within this sample, much of the variability in SCL-90 case identification was not explained by the logistic model, indicating the need to continue investigating factors that can identify childhood cancer survivors at risk for poor psychological adaptation. Studies with representative samples from other institutions will be necessary to validate and extend these findings. As new generations of survivors mature to adulthood, attention to cohort effects arising from changes in treatment regimens (ie, decreased radiation and anthracycline doses) will also be needed. Nonetheless, high rates of general psychological distress and suicidal symptoms in this sample should be a cause for concern. Although the adult survivors studied here may not be representative of the survivor population as a whole, their responses may indicate the kinds of problems seen in similar survivor clinic settings. Further work to improve prediction models, shorten the screening battery, and validate the screening against a structured interview are important next steps for this research.
We thank Lisa Kenney and Francis Cook, Jr, for their consultation.
Supported in part by grant no. T32 HS00063 from the Agency for Healthcare Research and Quality, United States Department of Health and Human Services, to the Harvard Pediatric Health Services Research Fellowship Program (C.R.), and by a grant from the Lance Armstrong Foundation (C.R.).
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Copyright © 2003 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
63 on two symptom scales or the GSI).
50 and as having a mental health problem if their Mental Health scale was 
2 = 2.20, df = 5, P = .82), with few outliers (three cases with standardized residuals 
