Work Personality, Core Self-evaluation and Perceived Career Barriers in Young Adult Central Nervous System Cancer Survivors.

PURPOSE: The purpose of this study is to examine the relationship between work personality, core self-evaluation (CSE), and perceived internal and external barriers to employment in a group of young adult CNS survivors. METHODS: The participants consisted of 110 young adult survivors of pediatric central nervous system (CNS) tumors aged between 18 and 30 years old (M = 23.05, SD = 3.36). Mediation analysis with structural equational modeling (SEM) technique was used to correlate a number of different measures (Work Personality [WP], Perceived Employment Barriers [PEB], and Core-Self Evaluation [CSE]). RESULTS: Results revealed an exceptionally well-fitting model to our data with work personality predicting CSE positively: ß = 0.34, SE = 0.07, 95% CI (0.18, 0.47) while CSE inversely predicts Perceived Barriers to Employment, ß = - 0.60, SE = 0.06, 95% CI (- 0.70, - 0.49). There is a direct pathway from WP to PEB once CSE was accounted for ß = - 0.20, SE = 0.07, 95% CI (- 0.33, - 0.06). The presence of both significant direct and indirect effects of WP on PEB implied that there was a partial mediating effect of CSE on the association between WP and PEB. CONCLUSIONS: Work personality is a robust construct that can be applied to young adult CNS survivors in effort to gain more insight into the personality and psychological factors that impact career development and employment in this group. The major finding of this study was that work personality and CSE had a significant direct effect on perceived career barriers and that there was a significant indirect effect with CSE acting as a mediator between developmental work personality and perceived career barriers.

Screening for fatigue in adolescent and young adult pediatric brain tumor survivors: accuracy of a single-item screening measure.

PURPOSE: Cancer-related fatigue (CRF) is one of the most commonly reported and distressing symptoms experienced by adolescent and young adult (AYA) cancer survivors. While national guidelines have recommended screening for CRF during routine follow-up appointments, the validity of using a one-item screening measure for fatigue has not been examined with AYA brain tumor survivors. The purpose of this study is to assess how well a single-item fatigue screen could identify clinically significant fatigue in childhood brain tumor survivors. METHODS: A single-item measure, the Fatigue Thermometer (FT), was compared with a more in-depth measure, the Multidimensional Fatigue Scale (MFS), in a cohort of AYA pediatric brain tumor survivors. One hundred and forty-two survivors (aged 12-32 years) completed the two instruments. RESULTS: Forty-two survivors were identified on the MFS as having clinically significant fatigue, but the FT was not found to be an accurate tool for identifying these cases. Although receiver operating characteristic curve analysis of FT ratings against the MFS criterion indicated good concordance between measures, no cutoff score on the FT was identified that resulted in acceptable sensitivity and specificity. CONCLUSIONS: Results from this study suggest that a single-item screening measure for fatigue is not able to reliably identify clinically significant fatigue in AYA brain tumor survivors.

A social program for adolescent and young adult survivors of pediatric brain tumors: The power of a shared medical experience.

Survivors of pediatric brain tumors experience several medical and psychosocial late effects including deficits in social competence. This mixed methods study investigated the experience of 19 adolescent and young adult survivors of pediatric brain tumors and 17 parents who participated in a social support program. Qualitative results demonstrated a significant social isolation that was compounded by medical late effects. Survivors perceived social support and acceptance from interactions with peers who have similar medical backgrounds as a key aspect of the group experience. Parents reported increased social confidence among survivors, although they did not report that social gains generalized beyond the group setting. Interventions to promote the transfer of specific social skills are needed.

Suicide ideation in pediatric and adult survivors of childhood brain tumors.

Survivors of pediatric brain tumors are at risk for long-term psychological morbidities. The current study investigated the prevalence and predictors of suicide ideation (SI) in a clinical sample of youth and adult survivors. Retrospective chart reviews were completed for 319 survivors of pediatric brain tumors who were assessed via clinical interview during routine neuro-oncology clinic visits between 2003 and 2007. Survivors were, on average, 18.0 years of age (SD = 4.9) and 10 years from diagnosis (SD = 5.0) at their most recent follow-up. The most common diagnosis was low-grade glioma (n = 162) followed by embryonal tumors (PNET/medulloblastoma; n = 64). Multivariable logistic regression was used to calculate odds ratios (OR) and 95 % confidence intervals (CI) for SI. Nearly 12 % of survivors (11.7 %, n = 37) reported SI. Five survivors (1.5 %) had documented suicide attempts, though none were fatal. In a multivariable model, adjusting for sex and age, history of depression (OR = 20.6, 95 % CI = 4.2-101.1), psychoactive medication treatment (OR = 4.5, 95 % CI = 1.8-11.2), observation or surgery only treatment (OR = 3.7, 95 % CI = 1.5-9.1), and seizures (OR = 3.6, 95 % CI = 1.1-11.1) were significantly associated with SI in survivors. Survivors of pediatric brain tumors appear to be at risk for experiencing SI. Our results underscore the importance of a multidisciplinary approach to providing follow-up care for childhood brain tumor survivors, including routine psychological screenings.

Medical, psychological, cognitive and educational late-effects in pediatric low-grade glioma survivors treated with surgery only.

BACKGROUND: Surgical resection is often the only treatment necessary for pediatric low-grade gliomas (LGGs) and is thought to define a population with an excellent long-term prognosis. The goal of this study was to describe the multidimensional late-effects of pediatric LGG survivors treated exclusively with surgery. METHODS: A retrospective chart review of "surgery-only" LGG survivors followed at Dana-Farber/Children's Hospital Cancer Care was undertaken. Patients had to be diagnosed with an LGG before the age of 22 years, treated with "surgery-only" and be at least 2 years from diagnosis. RESULTS: Sixty survivors were eligible with a median age at the time of review of 16.3 years and the median time since diagnosis of 8.4 years. Tumor locations were predominantly posterior fossa (47%) or cortical (33%). Eighty-five percent of patients had at least one ongoing late-effect, and 28% had three or more. The most common late-effects consisted of motor dysfunction (43%), visual problems (32%), anxiety (19%), social difficulties (19%), seizure disorders (17%), depression (15%), poor coordination/ataxia (14%), behavioral problems (13%), and endocrinopathies (10%). Nine patients had a history of suicidal ideation; two with suicide attempts. The mean full-scale IQ was normal, however, the number of survivors scoring one standard deviation below the mean was twice the expected number. Special education services were utilized by more than half of the survivors. CONCLUSIONS: "Surgery-only" LGG survivors may be more affected by their tumor and its resection than previously appreciated. A prospective study is needed to address this survivor population.

Adolescent and Young Adult Brain Tumor Survivors Report Increased Anxiety Even Years After Successful Treatment for Relapse.

Among survivors of pediatric cancers, brain tumor survivors are comparatively at high risk for experiencing relapsed disease. However, little is known about how disease relapse affects long-term psychological functioning in this cohort. This study of 162 pediatric brain tumor survivors, now adolescents and young adults (ages 12-36), demonstrates that survivors who have experienced relapsed disease are at increased risk for symptoms of anxiety, even years after successful treatment for relapse. Results underscore the need for adolescent and young adult survivors, particularly those with a history of relapsed disease, to receive ongoing psychosocial assessment and intervention that is integrated with their oncology follow-up care.

Prevalence and Correlates of Pain in Adolescent and Young Adult Survivors of Pediatric Brain Tumors.

Purpose: Survivors of pediatric brain tumors (PBTs) are at high risk for medical late effects, including pain. Although pain is common at PBT diagnosis and during treatment, less is known about survivors' pain after completing therapy. This study examined the prevalence and correlates of pain in long-term PBT survivors enrolled on Project REACH (Research Evaluating After Cancer Health), a cohort study of locally treated cancer survivors. Methods: Participants were 116 PBT survivors (ages 13-32; 51% male; mean 10.6 years from diagnosis) who completed self-report measures of pain and quality of life (QOL). Survivors reporting "moderate pain" ≥2 days/week or "severe pain" ≥1 day/week were classified as pain cases. Correlates of pain were examined using logistic regression. Results: In total 42 participants (36.2%) met pain case criteria with headache and muscular/skeletal pain most common sources of their worst pain (16 and 11 survivors, respectively). In adjusted analysis, pain cases were more likely to be female (odds ratio [OR] = 1.96, p = 0.034), and less likely to be in the older age group (18-22 years) than younger (13-17 years) age group (OR = 0.232, p = 0.006). No other demographic, disease, or treatment variables were associated with pain case status. Survivors categorized as pain cases reported inferior QOL across all domains of the PedsQL. Conclusions: A subset of PBT survivors experience significant pain that negatively impacts QOL years after completing therapy. Clinics caring for PBT survivors must incorporate appropriate pain assessment and treatment into standard care. Research is needed to better understand both risk factors and effective treatment strategies for pain in this vulnerable population.

Development of the perceived barriers scale: a new instrument identifying barriers to career development and employment for young adult survivors of pediatric CNS tumors.

PURPOSE: Given the significant employment disparities for survivors of pediatric brain tumors, there is increased need to conduct vocational and career research with this group. The purpose of the present study was to construct an instrument, the Perceived Barriers Scale, that is psychometrically sound and has both clinical and research application related to career and employment issues of pediatric brain tumor survivors. METHOD: The participants consisted of 110 young adult central nervous system survivors of childhood cancer aged between 18 and 30 years old (M = 23.05, SD = 3.36) who were identified by the DFCI Pediatric Brain Tumor Clinic. The 12-item Perceived Barriers Scale was developed from a comprehensive literature review, clinical interviews conducted with survivors of pediatric brain tumors, and feedback from multidisciplinary providers. Exploratory factor analysis and correlations were completed to examine the initial psychometric properties of the scale. RESULTS: Exploratory factors analysis identified two factors that accounted for 57.92% with the two factors labeled as internal barriers and external barriers. All factors loaded significantly onto their respective factors (.48 to .88). The results of the correlational analysis found significant relationships between both internal barrier and external barrier subscales and CSE and WHODAS-2 providing initial support for the construct validity of the Perceived Barriers Scale. CONCLUSIONS: Overall, the study findings indicate good psychometrics with the brevity of the scale increasing potential application and utilization in both research and clinical settings. IMPLICATIONS FOR CANCER SURVIVORS: Identification of employment barriers for brain tumor survivors provides opportunity for more targeted vocational intervention.

Validation of Three Previously Developed Short Forms of the Beck Depression Inventory for Youth: A Replication.

Three previously developed short forms of the Beck Depression Inventory-Youth (BDI-Y) were validated against the standard 20-item BDI-Y; 168 adolescent survivors completed the standard and short-form versions of the BDI-Y. The short forms were evaluated for internal consistency and compared with the standard BDI-Y using correlation coefficients and receiver operating characteristic curve analyses. The three short forms had good internal consistency (α > 0.85), high correlations with the total BDI-Y scale (r > 0.85), and good discrimination compared with the standard BDI-Y cutoff score (area under the ROC curve >0.95). Consistent with prior findings, strong psychometric properties of an eight-item short form support its use as a screening measure for adolescent cancer survivors.

Development and preliminary validation of a short form of the Beck Depression Inventory for Youth (BDI-Y) in a sample of adolescent cancer survivors.

PURPOSE: The aim of this study was to analyze adolescent cancer survivors' responses to the Beck Depression Inventory for Youth (BDI-Y) to determine if a short form of the measure could be developed that would accurately identify survivors with clinically significant levels of depressive symptoms. METHODS: Two hundred two adolescent survivors (mean age = 15.39 years, SD = 1.93) completed the BDI-Y at a single time point and were divided into two groups: a derivation sample (n = 105) and a replication sample (n = 97). Based on correlations with the total BDI-Y score in the derivation sample, items were selected for inclusion in three potential short forms, with 6, 8, and 11 items, respectively. These short forms were then evaluated against the full BDI-Y scale first in the derivation sample and subsequently in the replication sample (n = 97). RESULTS: Each of the three short forms had high correlations with the total BDI-Y scale (r > 0.95), good internal consistency (α > 0.80), and good overall discrimination compared to a standard BDI-Y cutoff score (AUC > 0.90). The eight-item short form demonstrated notable consistency across the derivation and replication samples, with high sensitivity and specificity using a cutoff score of ≥5, making it a promising tool for clinical screening. CONCLUSIONS: Abbreviated versions of the BDI-Y can accurately detect depression in adolescent cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: An eight-item short form demonstrates strong psychometric properties and potential for use as a screening measure in this population, while the 6- and 11-item short forms may be suited to other applications.

Screening for pain in pediatric brain tumor survivors using the pain thermometer.

Numerous instruments have been developed to measure pain within various populations; however, there remains limited understanding of how these tools are applicable to childhood cancer survivors. This study compared a single-item screening measure, the Pain Thermometer (PT), with a more in-depth measure, the Brief Pain Survey (BPS), in a cohort of childhood brain tumor survivors. Ninety-nine survivors (aged 13-32 years) with a median time from diagnosis of 9.9 years (range = 2-18 years) completed the 2 instruments. Thirty-seven survivors (37.4%) were identified on the BPS as having clinically significant pain, but the PT was not found to be an accurate tool for identifying these pain cases. Application of receiver operating characteristic curve analysis of PT ratings against BPS criterion indicated overall concordance between measures. No cutoff score on the PT were identified that resulted in acceptable sensitivity, meaning pain cases identified on the BPS would be missed on the PT. Findings suggest that a multi-item screening measure may better identify clinically significant pain in childhood brain tumor survivors compared with a 1-item screening measure alone.

The feasibility of psychosocial screening for adolescent and young adult brain tumor survivors: the value of self-report.

PURPOSE: Psychosocial screening is increasingly applied to childhood cancer survivors generally, but less so with pediatric brain tumor survivors despite their psychosocial risks. This study examined the utility and acceptability of psychological screening in pediatric brain tumor survivors. METHODS: Eighty-four adolescents (age 12-18) completed the Beck Youth Inventory-II and 79 young adults (age 19-30) completed the Brief Symptom Inventory-18. Their scores were compared to clinician ratings on the global assessment of functioning following clinical interviews. RESULTS: Eighty-four percent of participants completed measures in <30 min, 90 % reported no associated distress, and 98 % found measures easy to understand. Using established cut-off scores, 14 adolescents (17 %) and 21 young adults (27 %) were identified as clinical cases by self-report. Agreement with clinician report was generally low (kappa = .19, p = .077, adolescents; kappa = .34, p = .003, young adults), with clinicians tending to rate a higher proportion of both groups as having significant distress (24 % in adolescents; 32 % in young adults). Low self-concept scores in adolescents and deficits in social and vocational functioning in young adults contributed significantly to the discrepancies between self-report and clinician ratings. CONCLUSIONS: Pediatric brain tumor survivors are capable of completing self-report psychological measures without distress or burden. Self-report can be a valuable tool in the assessment of pediatric brain tumor survivors, particularly in adolescents, who may provide information not revealed in a clinical interview. However, self-report, should not be used as a "stand-alone" assessment because important areas of functioning may be minimized in survivors' reports. IMPLICATIONS FOR CANCER SURVIVORS: Utilizing self-report for psychosocial screening of adolescent and young adult brain tumor survivors may enhance clinical care and allow for better identification of survivors in need of psychological services.

Late effects of therapy for pediatric brain tumor survivors.

Approximately 2 of every 3 of all pediatric patients with brain tumors will be long-term survivors. However, there is a steep cost for pediatric brain tumor survivors, and the group as a whole faces significantly more late effects than many other survivors of pediatric cancers. Most of these effects can be attributed to direct neurologic damage to the developing brain caused by the tumor and its removal, the long-term toxicity of chemotherapy, or the effects of irradiation on the central nervous system. The late effects experienced by childhood brain tumor survivors involve multiple domains. This article will review the significant late effects that occur within the medical, neurocognitive, psychosocial, and economic domains of the survivorship experience. We conclude by discussing how the late effects in different domains often coexist and can create a complex set of obstacles that pose significant challenges for a survivor of a pediatric brain tumor on a daily basis.