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Year of Publication
1.  POSTTRAUMATIC STRESS DISORDER (PTSD) IN SURVIVORS OF HODGKIN’S LYMPHOMA (HL): PREVALENCE OF PTSD AND PARTIAL-PTSD COMPARED TO SIBLING CONTROLS 
Psycho-oncology  2011;22(2):434-440.
Objectives
Studies of PTSD document a significant proportion of cancer survivors reporting severe posttraumatic stress (PTS) symptoms, even when they do not meet full diagnostic criteria. However, few studies have directly examined the clinical significance of these “partial-PTSD” symptoms in survivors. This study aimed to investigate the prevalence of PTSD symptoms in a cohort of long-term survivors of HL, and to explore the clinical relevance of the partial-PTSD phenomenon by assessing impairment of function secondary to sub-threshold symptomatology.
Methods
The Posttraumatic Diagnostic Scale (PDS), was completed by 105 HL survivors and 101 sibling controls. Survivors age at time of participation ranged from 24–71 years, age at time of diagnosis ranged from 6–61 years, and the median time since diagnosis was 16 years (range = 7 – 34).
Results
PTSD prevalence was not significantly higher in HL survivors (13%) compared to sibling controls (6.9%, p = .098). However, a significantly larger proportion of survivors (35.2%) met criteria for partial-PTSD compared to siblings (17.8%, p = .004). Moreover, the majority of the survivors with partial-PTSD (86.5%) reported experiencing some functional impairment related to these PTS symptoms.
Conclusions
A significant number of HL survivors experience PTS symptoms severe enough to result in functional impairment. These findings underscore the importance of future research detailing the psychological and functional outcomes in survivors with partial-PTSD, and of careful clinical practice that assesses for functional impairment secondary to partial-PTSD symptomatology, in male and female survivors, even years after completion of therapy.
doi:10.1002/pon.2109
PMCID: PMC3908687  PMID: 22162210
Hodgkin’s Lymphoma; Long-Term Survivors; Posttraumatic Stress; Survey; Cancer; Oncology
2.  Cancer Prevention and Screening Practices of Siblings of Childhood Cancer Survivors: A Report from the Childhood Cancer Survivor Study 
Objective
To compare the skin and breast/cervical cancer prevention/screening practices of adult siblings of childhood cancer survivors with controls and to identify modifying factors for these practices.
Methods
Cross-sectional, self-report data from 2,588 adult siblings of 5+ year survivors of childhood cancer were analyzed to assess cancer prevention/screening practices. Two age, sex and race/ethnicity-matched samples (n=5,915 and n=37,789) of the Behavioral Risk Factor Surveillance System participants served as the comparison populations. Sociodemographic and cancer-related data were explored as modifying factors for sibling cancer prevention/screening practices through multivariable logistic regression.
Results
Compared to controls, siblings were more likely to practice skin cancer prevention behaviors: use of protective clothing (OR 2.85, 95% 2.39-3.39), use of shade (OR 2. 11, 95% 1.88-2.36), use of sunscreen (OR 1.27, 95% 1.14-1.40), and wearing a hat (OR 1.77, 95% 1.58-1.98). No differences were noted for breast/cervical cancer screening including mammography and Pap testing. Having less than a high school education and lack of health insurance were associated with diminished cancer prevention/screening behaviors. Survivor diagnosis, treatment intensity, adverse health, chronic health conditions, and second cancers were not associated with sibling cancer prevention/screening behaviors.
Conclusions
Siblings of cancer survivors report greater skin cancer prevention practices when compared with controls; however, no differences were noted for breast/cervical cancer screening practices. Access to care and lack of education may be associated with decreased cancer prevention/screening behaviors. Interventions are needed to address these barriers.
Impact
Research should be directed at understanding the impact of the cancer experience on sibling health behaviors.
doi:10.1158/1055-9965.EPI-11-1095
PMCID: PMC3392493  PMID: 22576363
Siblings; survivor; childhood cancer; prevention; screening
3.  Children's Psychological Distress during Pediatric HSCT: Parent and Child Perspectives 
Pediatric blood & cancer  2011;58(2):289-296.
Background
Hematopoietic stem cell transplantation (HSCT) can be challenging to pediatric recipients and their families. Little is known about the recipients' psychological status as they initiate treatment and in the year afterwards. The purpose of this study is to describe the psychological status of 107 pediatric HSCT recipients from their parents' perspective, and to compare reports from parents and children in a subset of 55 children. We hypothesized that there would be discrepancies between parent and child report of child distress.
Procedure
Multi-site, prospective study of eligible child participants and their parents who completed selected modules from the Structured Clinical Interview for DSM-IV-TR, Childhood Version (KID-SCID) the month before and one year after HSCT. Diagnoses were threshold or subthreshold.
Results
According to parents, nearly 30% of children had anxiety disorder_both before and after HSCT; approximately half of these met threshold criteria. Agreement between parents and children for anxiety disorders was poor at baseline (κ= −0.18, 95th % CI= −0.33, −0.02) and fair at 12 months (κ= 0.31, 95th % CI= −0.04, 0.66). Agreement about mood disorders was fair at baseline (10% prevalence, κ=0.39, 95th % CI=−0.02, 0.79) and moderate at 12 months (14% prevalence, κ=0.41, 95th % CI= 0.02, 0.80).
Conclusions
Anxiety (30%) and mood (10 to 14%) symptoms are common in children both before and after HSCT; parent and child reports of these symptoms do not agree. Input from parents and children is recommended to identify more accurately children who may need additional intervention during and following HSCT.
doi:10.1002/pbc.23185
PMCID: PMC3257159  PMID: 21618413
parent; child; psychological distress
4.  Psychological Outcomes of Siblings of Cancer Survivors: A Report from the Childhood Cancer Survivor Study 
Psycho-oncology  2010;20(12):1259-1268.
Objective
To identify risk factors for adverse psychological outcomes among adult siblings of long-term survivors of childhood cancer.
Methods
Cross-sectional, self-report data from 3,083 adult siblings (mean age 29 years, range 18-56 years) of 5+ year survivors of childhood cancer were analyzed to assess psychological outcomes as measured by the Brief Symptom Inventory-18 (BSI-18). Sociodemographic and health data, reported by both the siblings and their matched cancer survivors were explored as risk factors for adverse sibling psychological outcomes through multivariable logistic regression.
Results
Self-reported symptoms of psychological distress, as measured by the global severity index of the BSI-18, were reported by 3.8% of the sibling sample. Less than 1.5% of siblings reported elevated scores on two or more of the subscales of the BSI-18. Risk factors for sibling depression included having a survivor brother (OR 2.22, 95% CI 1.42-3.55), and having a survivor with impaired general health (OR 2.15, 95% CI 1.18-3.78). Siblings who were younger than the survivor reported increased global psychological distress (OR 1.81, 95% CI 1.05-3.12), as did siblings of survivors reporting global psychological distress (OR 2.32, 95% CI 1.08-4.59). Siblings of sarcoma survivors reported more somatization than did siblings of leukemia survivors (OR 2.07, 95% CI 1.05-3.98).
Conclusions
These findings suggest that siblings of long-term childhood cancer survivors are psychologically healthy in general. There are, however, small subgroups of siblings at risk for long-term psychological impairment who may benefit from preventive risk-reduction strategies during childhood while their sibling with cancer is undergoing treatment.
doi:10.1002/pon.1848
PMCID: PMC3223600  PMID: 22114043
5.  Suicide Ideation in Adult Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study 
Journal of Clinical Oncology  2009;28(4):655-661.
Purpose
To evaluate risk of suicide ideation (SI) after childhood cancer, prevalence of SI in a cohort of adult survivors of pediatric cancers was compared with prevalence in a sibling comparison group. The relationship of SI to cancer treatment and current health was examined, and the hypothesis that poor physical health is significantly associated with suicidality, after adjusting for depression, was specifically tested.
Methods
Nine thousand one hundred twenty-six adult survivors of childhood cancer and 2,968 siblings enrolled onto the Childhood Cancer Survivor Study completed a survey describing their demographics and medical and psychological functioning, including SI in the prior week.
Results
Of survivors, 7.8% reported SI compared with 4.6% of controls (odds ratio = 1.79; 95% CI, 1.4 to 2.4). Suicidality was unrelated to age, age at diagnosis, sex, cancer therapy, recurrence, time since diagnosis, or second malignancy. SI was associated with primary CNS cancer diagnosis, depression, and poor health outcomes including chronic conditions, pain, and poor global health rating. A logistic regression analysis showed that poor current physical health was significantly associated with SI even after adjusting for cancer diagnosis and depression.
Conclusion
Adult survivors of childhood cancers are at increased risk for SI. Risk of SI is related to cancer diagnosis and post-treatment mental and physical health, even many years after completion of therapy. The association of suicidal symptoms with physical health problems is important because these may be treatable conditions for which survivors seek follow-up care and underscores the need for a multidisciplinary approach to survivor care.
doi:10.1200/JCO.2009.22.8635
PMCID: PMC2816000  PMID: 19841325
6.  General Internist Communication about Sexual Function with Cancer Survivors 
Journal of General Internal Medicine  2009;24(Suppl 2):407-411.
ABSTRACT
BACKGROUND
Sexual dysfunction is an important issue that affects many cancer survivors who are increasingly being cared for by internists.
OBJECTIVE
To examine the attitudes and reported practices of internists regarding survivorship care as it pertains to sexual dysfunction.
DESIGN
Surveys were sent to 406 physicians affiliated with the Department of Internal Medicine at the University of Colorado Denver School of Medicine. Of the 319 eligibles, 227 were returned (71% RR).
MAIN RESULTS
Of the 227 responders, 46% were “somewhat/very” likely to initiate a conversation about sexual dysfunction; 62% “never/rarely” addressed sexual dysfunction. Each additional weekly hour spent in patient care was associated with a 2% increase in the likelihood of sexual dysfunction being addressed or discussions about sexual dysfunction being initiated. Reported inadequate preparation/formal training around survivorship issues was associated with sexual dysfunction being addressed less often (odds ratio [OR] = 0.45). Perception of patient anxiety or fears about health was associated with sexual dysfunction being addressed more often (OR = 2.38). Perceived preparedness to evaluate long-term effects was associated with a greater likelihood of physicians initiating discussions about sexual functioning (OR = 2.49).
CONCLUSIONS
Cancer survivors receive their long-term care from internists. Our results suggest that sexual dysfunction is often not addressed during their follow-up care. Additional training is needed to prepare physicians to negotiate this difficult issue.
doi:10.1007/s11606-009-1026-5
PMCID: PMC2763155  PMID: 19838840
general internist; survivorship; sexuality communication
7.  Psychological Status in Childhood Cancer Survivors: A Report From the Childhood Cancer Survivor Study 
Journal of Clinical Oncology  2009;27(14):2396-2404.
Psychological quality of life (QOL), health-related QOL (HRQOL), and life satisfaction outcomes and their associated risk factors are reviewed for the large cohort of survivors and siblings in the Childhood Cancer Survivor Study (CCSS). This review includes previously published manuscripts that used CCSS data focused on psychological outcome measures, including the Brief Symptom Inventory (BSI-18), the Medical Outcomes Survey Short Form-36 (SF-36), the Cantril Ladder of Life, and other self-report questionnaires. Comparisons and contrasts are made between siblings and survivors, and to normative data when available, in light of demographic/health information and abstracted data from the medical record. These studies demonstrate that a significant proportion of survivors report more symptoms of global distress and poorer physical, but not emotional, domains of HRQOL. Other than brain tumor survivors, most survivors report both good present and expected future life satisfaction. Risk factors for psychological distress and poor HRQOL are female sex, lower educational attainment, unmarried status, annual household income less than $20,000, unemployment, lack of health insurance, presence of a major medical condition, and treatment with cranial radiation and/or surgery. Cranial irradiation impacted neurocognitive outcomes, especially in brain tumor survivors. Psychological distress also predicted poor health behaviors, including smoking, alcohol use, fatigue, and altered sleep. Psychological distress and pain predicted use of complementary and alternative medicine. Overall, most survivors are psychologically healthy and report satisfaction with their lives. However, certain groups of childhood cancer survivors are at high risk for psychological distress, neurocognitive dysfunction, and poor HRQOL, especially in physical domains. These findings suggest targeting interventions for groups at highest risk for adverse outcomes and examining the positive growth that remains despite the trauma of childhood cancer.
doi:10.1200/JCO.2008.21.1433
PMCID: PMC2677925  PMID: 19255309
8.  Reliability and Validity of the Childhood Cancer Survivor Study Neurocognitive Questionnaire 
Cancer  2008;113(8):2188-2197.
Background
Up to 40% of childhood cancer survivors may experience neurocognitive impairment in one or more specific domains. As such, regular monitoring has been recommended for patients exposed to cranial irradiation and/or antimetabolite chemotherapy. This study reports the results of a questionnaire developed to identify those survivors who may be experiencing neurocognitive problems.
Methods
Participants for this study were 7,121 members of the Childhood Cancer Survivor Study cohort (6,739 survivors and 382 siblings). These participants completed a new neurocognitive questionnaire designed to assess functions commonly affected by cancer therapy, as well as a standard measure of emotional functioning. A measure of cognitive and emotional functioning was also completed on a subset of the patients roughly seven years prior to the current questionnaire. Responses to the questionnaires among subgroups of survivors were then analyzed to examine the reliability and validity of the new neurocognitive questionnaire.
Results
Four reliable factors were identified that assessed task efficiency, emotional regulation, organization, and memory skills. These neurocognitive factors accurately discriminated between survivors who were at “high risk” for neurocognitive dysfunction, due to neurologic abnormalities or a history of intensive focal cranial irradiation, from healthy “low risk” survivors and siblings.
Conclusions
The questionnaire demonstrated excellent reliability, as well as construct and discriminative validity. It appears to be a practical and efficient tool for monitoring neurocognitive outcomes in adult survivors of pediatric cancer.
Condensed Abstract
Regular monitoring of neurocognitive functioning is recommended for pediatric cancer survivors exposed to cranial irradiation and/or antimetabolite chemotherapy. The Childhood Cancer Survivor Study - Neurocognitive Questionnaire appears to be a practical and efficient tool for such monitoring.
doi:10.1002/cncr.23809
PMCID: PMC2574840  PMID: 18792068
Childhood Cancer Survivor Study; neurocognitive; questionnaire; late effects

Results 1-8 (8)