Bradley Zebrack

Psychological Status in Childhood Cancer Survivors: A Report From the Childhood Cancer Survivor Study

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

Using patient-reported outcomes in clinical practice: challenges and opportunities.

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.

Prevalence and Predictors of Posttraumatic Stress Disorder in Adult Survivors of Childhood Cancer

PurposeIntroduce and explore issues at an international conference about the use of patient-reported outcomes (PROs) in clinical practice.MethodsReview of salient literature, clinical and personal experiences, conference presentations and discussions, and post-conference comments from outside experts.ResultsPROs (information from patients about a health condition and its management) have been assessed through self-reports for at least four decades. Traditional applications are in clinical and health services research. Uses in clinical practice, although increasing, are less common and more challenging. PROs can enhance the understanding of patients’ experiences and responses to therapy and inform clinical practice.ConclusionsWe pose and discuss four main questions: (1) Will clinicians accept PRO measures? (2) Will clinicians use PRO measures? (3) Will measuring PROs actually improve those outcomes? (4) Will PROs be perceived as having other, less salutary purposes? A patient-centered perspective on PRO measurement presents issues about the extent to which PROs can accurately capture patient experiences and assess psychosocial and environmental factors that influence communication with clinicians and eventual outcomes. We end with comments about the intersection of PROs and bioethics, noting contributions that PROs may make to beneficence, patient autonomy, and distributive justice.

Recommendations for the implementation of distress screening programs in cancer centers: Report from the American Psychosocial Oncology Society (APOS), Association of Oncology Social Work (AOSW), and Oncology Nursing Society (ONS) joint task force

OBJECTIVE: This study compared the prevalence of symptoms of posttraumatic stress disorder (PTSD), with functional impairment and/or clinical distress, among very long-term survivors of childhood cancer and a group of healthy siblings. METHODS: A total of 6542 childhood cancer survivors >18 years of age who received diagnoses between 1970 and 1986 and 368 siblings of cancer survivors completed a comprehensive demographic and health survey. RESULTS: A total of 589 survivors (9%) and 8 siblings (2%) reported functional impairment and/or clinical distress in addition to the set of symptoms consistent with a full diagnosis of PTSD. Survivors had more than fourfold greater risk of PTSD, compared with siblings (odds ratio [OR]: 4.14 [95% confidence interval [CI]: 2.08–8.25]). With controlling for demographic and treatment variables, increased risk of PTSD was associated with educational level of high school or less (OR: 1.51 [95% CI: 1.16–1.98]), being unmarried (OR: 1.99 [95% CI: 1.58–2.50]), having annual income below

Social well-being among adolescents and young adults with cancer: A systematic review.

20000 (OR: 1.63 [95% CI: 1.21–2.20]), and being unemployed (OR: 2.01 [95% CI: 1.62–2.51]). Intensive treatment also was associated with increased risk of full PTSD (OR: 1.36 [95% CI: 1.06–1.74]). CONCLUSIONS: PTSD was reported significantly more often by survivors of childhood cancer than by sibling control subjects. Although most survivors apparently are faring well, a subset reported significant impairment that may warrant targeted intervention.

Social well-being among adolescents and young adults with cancer

In 2015, the American College of Surgeons (ACoS) Commission on Cancer will require cancer centers to implement screening programs for psychosocial distress as a new criterion for accreditation. A joint task force from the American Psychosocial Oncology Society, the Association of Oncology Social Work, and the Oncology Nursing Society developed consensus‐based recommendations to guide the implementation of this requirement. In this review, the authors provide recommendations regarding each of the 6 components necessary to meet the ACoS standard: 1) inclusion of psychosocial representation on the cancer committee, 2) timing of screening, 3) method/mode of screening, 4) tools for screening, 5) assessment and referral, and 6) documentation. Cancer 2014;120:2946–2954.

Pain in long-term adult survivors of childhood cancers and their siblings: A report from the Childhood Cancer Survivor Study

A cancer diagnosis during adolescence or young adulthood may negatively influence social well‐being. The existing literature concerning the social well‐being of adolescents and young adults (AYAs) with cancer was reviewed to identify gaps in current research and highlight priority areas for future research.

Health status and quality of life among non-Hodgkin lymphoma survivors

A cancer diagnosis during adolescence or young adulthood may negatively influence social well‐being. The existing literature concerning the social well‐being of adolescents and young adults (AYAs) with cancer was reviewed to identify gaps in current research and highlight priority areas for future research.

Next steps for adolescent and young adult oncology workshop: An update on progress and recommendations for the future

Summary Adult survivors of childhood cancer experience increased risk for reporting a pain condition and for using prescription analgesics compared to a sibling control group. ABSTRACT Little is known about pain among long‐term adult survivors of childhood cancers. The study investigated pain prevalence in this population compared with sibling controls and examined pain‐related risk factors. Three self‐reported pain outcomes including pain conditions, prescription analgesics used, and pain attributed to cancer and treatment were assessed among 10,397 cancer survivors and 3034 sibling controls from the Childhood Cancer Survivor Study. Pain conditions (pain/abnormal sensation, migraines, and other headaches) were reported by 12.3%, 15.5%, and 20.5% of survivors, respectively; 16.7% of survivors reported use of prescription analgesics, and 21% attributed pain to cancer and treatment. Risks of reporting pain conditions and using prescription analgesics were higher among survivors than siblings, adjusting for sociodemographic factors. Younger age at diagnosis and a history of non‐Hodgkin lymphoma, Wilms tumor, or neuroblastoma (compared to leukemia) were associated with greater risk of reporting pain conditions. A history of bone cancer or soft tissue sarcoma (compared to leukemia) was associated with greater risks of using prescription analgesics and cancer‐related pain attribution. Non‐brain‐directed scatter irradiation was associated with elevated risk for migraines and cancer‐related pain attribution. Female gender and lower educational attainment were associated with increased reports of all 3 pain outcomes; minority status, unemployment, and being single were associated with greater risks for reporting pain conditions. These findings contribute to the understanding of pain and associated risk factors among adult survivors of childhood cancer and suggest areas of focus for pain intervention.

Defining medical posttraumatic stress among young adult survivors in the Childhood Cancer Survivor Study

A growing body of evidence suggests that long‐term survivors with 1 of the more common forms of adult cancer report a quality of life (QOL) similar to that in the general population. However, specific concerns have been identified (sexual dysfunction, fatigue, distress) in this population. Also, less is known concerning survivors of adult non‐Hodgkin lymphoma (NHL), a disease often marked by alternating periods of disease and remission. Therefore, in the current study, the authors compared the QOL status of individuals who reported having active NHL with the QOL status of individuals who were disease‐free short‐term survivors (STS) (2‐4 years postdiagnosis) and long‐term survivors (LTS) (≥5 years postdiagnosis).