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1.  Treatment adherence among adolescents with epilepsy: what really matters? 
Epilepsy & behavior : E&B  2013;27(1):59-63.
Treatment adherence is often suboptimal among adolescents with epilepsy. Yet knowledge is lacking regarding factors that affect adherence. Empirical studies and theories of human development suggest that self-management skills, self-efficacy, and sense of control are related to adherence. Eighty-eight adolescents with epilepsy, and their parents, completed standardized measures assessing epilepsy knowledge and expectations, treatment self-management, sense of control, and self-efficacy. Better self-reported parent adherence was correlated with greater epilepsy knowledge/expectations (p<0.001) and more medications (p=0.042). Better self-reported adolescent adherence was correlated with fewer siblings (p=0.003) and higher adolescent epilepsy knowledge/expectations (p<0.001). Greater adolescent epilepsy knowledge/expectations correlated with parent self-reported adherence (<0.001), powerful others locus of control (p=0.008), and adolescent/parent discordance regarding epilepsy knowledge/expectations (p<0.001). Interventions that enhance adolescent’s knowledge of epilepsy and their treatment plan, while insuring that teens and parents are in agreement with regards to epilepsy treatment, might contribute to better adherence.
doi:10.1016/j.yebeh.2012.11.047
PMCID: PMC3615641  PMID: 23376337
Adolescent; Adherence; Epilepsy; Survey; Questionnaire
2.  Pain in Long-Term Adult Survivors of Childhood Cancers and Their Siblings: A Report from the Childhood Cancer Survivor Study 
Pain  2011;152(11):2616-2624.
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 3,034 sibling controls from the Childhood Cancer Survivor Study (CCSS). 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 three 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.
doi:10.1016/j.pain.2011.08.006
PMCID: PMC3304496  PMID: 21907493
Long-term adult survivors of childhood cancer; Self-reported pain; Pain attribution; Risk factors
3.  Health-Related Quality of Life of Young Adult Survivors of Childhood Cancer: A Review of Qualitative Studies 
Purpose: The occurrence of late effects, combined with traditional growth and developmental issues, can significantly affect the health-related quality of life (HRQOL) of young adult survivors of childhood cancer (YASCC). Limited HRQOL measurement tools have been developed or validated for YASCC. The purpose of this study was to identify the domains of HRQOL that are unique to YASCC by conducting a systematic review of qualitative studies. Specifically, we compared the findings to the classical framework of HRQOL that was developed for survivors of adult-onset cancer and identified specific domains not being assessed in existing HRQOL instruments for YASCC. Methods: We searched qualitative studies published in peer-reviewed journals from 2000 to 2010 in the PsychINFO, PubMed, and EBSCOhost databases. A set of keywords and inclusion/exclusion criteria were utilized to identify eligible studies with a focus on survivorship and HRQOL issues of YASCC. Results: Sixteen studies met the inclusion/exclusion criteria and were investigated in this study. Six important domains of HRQOL were identified (physical, social, psychological, spiritual, fertility/sexual, resilience, and body appearance) with several sub-domains. Conclusion: Use of the classical HRQOL framework and existing instruments is not comprehensive enough for YASCC. Adding unique domains to the classical framework and existing instruments will make them valuable tools for measuring the HRQOL of YASCC and increase health professionals' ability to identify if and when psychosocial services are needed for this unique population.
doi:10.1089/jayao.2011.0033
PMCID: PMC3621306  PMID: 23610733
5.  Prevalence and Predictors of Posttraumatic Stress Disorder in Adult Survivors of Childhood Cancer: a report from the Childhood Cancer Survivor Study 
Pediatrics  2010;125(5):e1124-e1134.
Objective
Recent studies have found that a subset of young adult survivors of childhood cancer report posttraumatic stress symptoms in response to their diagnosis and treatment. However, it is unclear if these symptoms are associated with impairment in daily functions and/or significant distress, thereby resulting in a clinical disorder. Furthermore, it is unknown whether this disorder continues into very long-term survivorship, including the 3rd and 4th decades of life. This study hypothesized that very long-term survivors of childhood cancer would be more likely to report symptoms of posttraumatic stress disorder, with functional impairment and/or clinical distress, compared to a group of healthy siblings.
Patients and Methods
6,542 childhood cancer survivors over the age of 18 who were diagnosed between 1970 and 1986 and 368 siblings of cancer survivors completed a comprehensive demographic and health survey.
Results
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 Posttraumatic Stress Disorder (PTSD). Survivors had more than a four-fold risk of PTSD compared to siblings (OR=4.14, 95%CI: 2.08-8.25). 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), annual income less than $20,000 (OR=1.63, 95% CI=1.21-2.20), and being unemployed (OR=2.01, 95% CI=1.62-2.51). Intensive treatment was also associated with increased risk of full PTSD (OR=1.36, 95% CI 1.06 -1.74).
Conclusions
Posttraumatic stress disorder is reported significantly more often by childhood cancer survivors than by sibling controls. Although most survivors are apparently doing well, a subset report significant impairment that may warrant targeted intervention.
doi:10.1542/peds.2009-2308
PMCID: PMC3098501  PMID: 20435702
childhood cancer; young adult
6.  Health Status and Quality of Life among non-Hodgkin Lymphoma Survivors 
Cancer  2009;115(14):3312-3323.
BACKGROUND
A growing body of evidence suggests that long-term survivors with one of the more common forms of adult cancer report similar quality of life (QOL) to the general population. However, specific concerns have been identified (sexual dysfunction, fatigue, distress) in this population. Also, less is known about survivors of adult non-Hodgkin lymphoma (NHL), a disease often marked by alternating periods of disease and remission. Therefore, this study compares the QOL status of individuals who report having active NHL with those who are disease-free short-term (2–4 years post-diagnosis; STS) and long-term (≥5 years post-diagnosis; LTS) survivors.
METHODS
Eligible survivors completed a mailed survey with validated measures: physical and mental health status, SF-36; cancer-related QOL, FACT-LYM; and self-reported impact of cancer, IOC. Other data were collected to examine as correlates.
RESULTS
Seven-hundred and sixty one survivors identified from two NC cancer registries participated. Subjects averaged 10.4 (range, 2–44) years post-diagnosis and 62.7 (range, 25–92) years of age. Survivors with active disease (n=109) demonstrated worse physical and mental health functioning, QOL, and less positive and more negative impacts of cancer when compared to disease-free survivors (n=652; all P≤.01). No significant differences were found between STS and LTS.
CONCLUSIONS
While NHL patients with active disease reported more negative outcomes when compared to off-treatment survivors, length of time since diagnosis did not appear to matter with regard to outcomes for STS and LTS. In addition, mixed results from comparisons to general population norms suggest the need for supportive care for this diverse survivorship group.
doi:10.1002/cncr.24391
PMCID: PMC2718726  PMID: 19452546
Quality of life; non-Hodgkin lymphoma; post-traumatic stress; FACT-G; FACT-LYM; SF-36; IOC
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

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