Objectives: Evaluate the implementation of cognitive-behavioral therapy (CBT) for chronic pain in a clinical setting by comparing youth with sickle cell disease (SCD) who initiated or did not initiate CBT. Design: Youth with SCD (ages 6–18; n = 101) referred for CBT for chronic pain were compared based on therapy attendance: Established Care; Early Termination; or Comparison (i.e., did not initiate CBT). Setting: Outpatient pediatric psychology and comprehensive SCD clinics in 3 locations at a southeastern children's hospital. Interventions: CBT delivery was standardized. Treatment plans were tailored to meet individualized needs. Main Outcome Measures: Healthcare utilization included pain-related inpatient admissions, total inpatient days, and emergency department reliance (EDR) at 12-months pre-post CBT. Patient-reported outcomes (PROs) included typical pain intensity, functional disability, and coping efficacy pre-post treatment. Results: Adjusting for age, genotype, and hydroxyurea, early terminators of CBT had increased rates of admissions and hospital days over time relative to comparisons; those who established care had faster reduction in admissions and hospital days over time relative to comparisons. EDR decreased by 0.08 over time for Established Care and reduced by 0.01 for every 1 completed session. Patients who completed pre- and post-treatment PROs reported decreases in typical pain intensity, functional disability, and improved coping efficacy. Conclusions: Establishing CBT care may support reductions in admissions for pain, length of stay, and EDR for youth with chronic SCD pain, which may be partially supported by patient-reported improvements in functioning, coping, and lower pain intensity following CBT. Enhancing clinical implementation of multidisciplinary treatments may optimize the health of these youth.

Purpose: The objective of this article is to demonstrate how user-centered design theory and methods can be employed to develop and iteratively improve technologies to support survivors of childhood cancer. Methods: Focus groups and structured interviews with young adult survivors of pediatric cancer (N = 3), parents (N = 11), and healthcare providers (N = 14) were conducted to understand their needs as potential users and the contexts in which they would use an electronic personal health record (PHR) for survivors, Cancer SurvivorLinkTM (https://cancersurvivorlink.org/). Usability evaluations were conducted to assess the functionality of the PHR using think aloud protocol with survivors/parents (N = 4) and focus groups with providers (N = 12). Results: Major themes identified through the needs assessment guided design of the PHR, including (1) education about the lifelong healthcare needs of pediatric cancer survivors (“Learn”), (2) secure electronic storage for healthcare documents to direct long-term follow-up care (“Store”), and (3) communication functionality to allow sharing of health documents with healthcare providers (“Share”). Usability evaluations identified challenges with the PHR design, which informed site enhancements to improve PHR usefulness and ease of use including a registration wizard and healthcare provider directory. Conclusions: User-centered design methods informed iterative enhancements to an untethered, patient-controlled PHR to address usability barriers and meet the self-identified needs of survivors of childhood cancer and their providers.

Childhood, adolescent, and young adult (CAYA) cancer survivors may be at risk for a severe course of COVID-19. Little is known about the clinical course of COVID-19 in CAYA cancer survivors, or if additional preventive measures are warranted. We established a working group within the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG) to summarize existing evidence and worldwide recommendations regarding evidence about factors/conditions associated with risk for a severe course of COVID-19 in CAYA cancer survivors, and to develop a consensus statement to provide guidance for healthcare practitioners and CAYA cancer survivors regarding COVID-19.

Purpose: Cancer-related fatigue (CRF) negatively affects the lives of childhood, adolescent, and young adult (CAYA) cancer survivors. We aimed to provide an evidence-based clinical practice guideline (CPG) with internationally harmonized CRF surveillance recommendations for CAYA cancer survivors diagnosed < 30 years. Methods: This CPG was developed by a multidisciplinary panel under the umbrella of the International Late Effects of Childhood Cancer Guideline Harmonization Group. After evaluating concordances and discordances of four existing CPGs, we performed systematic literature searches. We screened articles for eligibility, assessed quality, extracted, and summarized the data from included articles. We formulated recommendations based on the evidence and clinical judgment. Results: Of 3647 articles identified, 70 articles from 14 countries were included. The prevalence of CRF in CAYA cancer survivors ranged from 10–85%. We recommend that healthcare providers are aware of the risk of CRF, implement regular screening with validated measures, and recommend effective interventions to fatigued survivors. Conclusions: A considerable proportion of CAYA cancer survivors suffers from CRF even years after the end of treatment. Implications for Cancer Survivors: We recommend that healthcare providers adopt regular screening to detect and treat CRF early and positively influence survivors’ health and quality of life.

BACKGROUND: The objective of the current study was to characterize and identify factors associated with perceptions of risk of infertility among adult male survivors of childhood cancer. METHODS: A total of 1233 adult male survivors from the Childhood Cancer Survivor Study who were without a history of disease recurrence or subsequent malignancy reported their perceptions of their risk of infertility compared with men never diagnosed with cancer. Survivors were a median age of 37.8 years (range, 22.0-58.7 years) and were 28.4 years from their diagnosis (range, 21.4-39.2 years). Multivariable logistic regression evaluated factors associated with perceptions of risk. RESULTS: Overall, 35.9% of the survivors (443 of 1233 survivors) reported perceptions of their risk of infertility that were discordant with their actual risk based on previous cancer treatment exposures. Discordant perceptions were equally common among men exposed to gonadotoxic therapies (36.3%; 311 of 857 men) and those with no history of gonadotoxic exposure (35.1%; 132 of 376 men). Survivors who fathered children (odds ratio [OR], 4.14; 95% confidence interval [95% CI], 2.74-6.24), had no survivor-focused health care (OR, 3.07; 95% CI, 1.57-5.99), were nonwhite (OR, 2.28; 95% CI, 1.10-4.75), and were of lower income were more likely to report no increased risk of infertility after gonadotoxic treatment. Perceptions of increased risk of infertility among men with no history of gonadotoxic treatment were predicted by never having fathered a child (OR, 1.88; 95% CI, 1.17-3.03), recent participation in survivor-focused health care (OR, 2.11; 95% CI, 1.01-4.42), and higher educational achievement. CONCLUSIONS: Many male survivors of childhood cancer are unaware of how their cancer treatments could impact their reproductive health, underscoring the need for all patients to receive education regarding their risk of infertility throughout the continuum of cancer care. Cancer 2018;124:2447-55. © 2018 American Cancer Society.

Aims: To estimate the level of alcohol consumption behaviors in adult survivors of childhood cancer and to test associations between alcohol consumption behaviors and symptoms of neurocognitive impairment and emotional distress. Design: Retrospective cohort study with longitudinal follow-up of self-reported health outcomes. Setting: Childhood Cancer Survivor Study (CCSS), a 26-center study of ≥ 5-year survivors of childhood cancer diagnosed ≤ 21 years of age between 1970 and 1986 in the United States and Canada. Participants: A total of 4484 adult survivors of childhood cancer [mean (standard deviation) age at evaluation = 34.8 (6.1) years; time from diagnosis = 24.8 (4.4) years] and 1651 sibling controls who completed surveys reporting on alcohol use, neurocognitive impairment and emotional distress. Measurements: Survivor report of alcohol use included age at drinking initiation and quantity and frequency of alcohol consumption. Neurocognition was assessed using the CCSS Neurocognitive Questionnaire. Emotional distress symptoms were measured using the Brief Symptoms Inventory–18 and the Posttraumatic Stress Diagnostic Scale. Findings: After adjustment for childhood cancer treatment exposures, including cranial radiation therapy, drinking initiation prior to 18 years of age was associated with 30% increased risk of subsequent memory problems [risk ratio (RR) = 1.3; 95% confidence interval (CI) = 1.1–1.5]. Younger age at drinking initiation was associated with future risk of depression (RR = 1.3; 95% CI = 1.1–1.5), anxiety (RR = 1.6; 95% CI = 1.3–2.1), and somatization (RR = 1.2; 95% CI = 1.1–1.4). Persistent heavy/risky drinking was associated with 80% increased risk of persistent psychological distress (RR = 1.8, 95% CI = 1.4–2.3). Conclusions: Drinking initiation during adolescence is associated with modest increased risk for memory impairment and emotional distress in adult survivors of childhood cancer.

Objective: Standardized pain assessment and interventions are recommended for youth hospitalized for pain. This quality improvement project integrated into a pediatric psychology service aimed to increase the standardized assessment of pain-related functional ability for youth with sickle cell disease (SCD) hospitalized for pain. Method: Children and adolescents (n = 102) with SCD referred for psychology consultation for poor coping in response to pain during hospitalization completed a validated self-report of functional ability in addition to pain intensity during inpatient psychology visits. At the time of the quality initiative, routine and standardized assessment of pain-related functional ability was not integrated into standard clinical care. Plan-do-study-act cycles determined the feasibility and addressed common barriers of routine assessment and documentation of pain-related functional ability among youth with SCD during inpatient psychology visits with the primary goal to increase assessment of functional ability to at least 85% among patients with SCD referred for pediatric psychology consultation to address pain management within 1 year. Results: Through iterative plan-do-study-act cycles, routine assessment of pain-related functional ability during psychology visits increased to an average of 93% over the course of 12 months. Routine, standardized assessment of functional ability was considered feasible within a pediatric psychology service. Conclusions/Lessons Learned: This project supported the feasibility of integrating standardized assessment of functional ability to enhance pain assessment for youth hospitalized for SCD pain as part of routine clinical care in a multidisciplinary setting regardless of psychology referral.

© 2016 Wolters Kluwer Health, Inc. All rights reserved.Background: Improved treatment for pediatric cancers has ensured an evergrowing population of patients surviving into adulthood. The current study evaluated the impact of previous engagement in survivor care on patient knowledge and awareness of health risks as young adults. Procedure: Young adult survivors of childhood cancers (N=93,M age=23.63 y) were recruited during their annual survivor clinic visit. Participants completed self-reported measures of demographics, treatment knowledge, perception of future health risks, participation in previous survivor care, and neurocognitive functioning. Results: In total, 82% of patients (N=76/93) reported previously participating in survivorship care. These patients were more likely to have knowledge of their radiation treatment (P=0.034) and more likely to recognize risk for future health effects from their treatment (P=0.019). Income between $10,000 and $24,999 (odds ratio=0.168; 95% confidence interval, 0.046-0.616; P=0.031) was associated with decreased patient knowledge regarding diagnosis. Male sex (odds ratio=0.324; 95% confidence interval, 0.135-0.777; P=0.012) was associated with less knowledge of future health risks. Patients with self-reported difficulties on the CCSS-NCQ were more likely to regard their cancer treatment as a future health risk. Conclusion: Participation in survivor care plays an important role in imparting information to young adult survivors of pediatric cancer regarding their disease history and risk for future health problems.

Objective: To evaluate concurrent and longitudinal associations between psychosocial functioning and physical activity in adolescent and young adult survivors of early childhood cancer. Methods: Adolescent survivors of early childhood cancer (diagnosed before age four) participating in the Childhood Cancer Survivor Study completed the Coping Health and Illness Profile–Adolescent Edition (CHIP-AE; n = 303; mean age at survey: 17.6 years). A subset of these survivors (n = 248) completed a follow-up survey an average of 6.0 years later (range: 4-10). Logistic regression identified associations between psychosocial functioning in adolescence and physical activity levels in adolescence and young adulthood. Results: Survivors reported low physical activity as adolescents (46.1% scored below CHIP-AE cut-point) and young adults (40.8% below Centers for Disease Control guidelines). Poor physical activity during adolescence was associated with female sex (OR = 2.06, 95% CI, 1.18-3.68), parents with less than a college education (OR = 1.91, 95% CI, 1.11-3.32), previous treatment with cranial radiation (OR = 3.35, 95% CI, 1.69-6.88), TV time (OR = 1.77, 95% CI, 1.00-3.14), and limitations of activity due to health or mobility restrictions (OR = 8.28, 95% CI, 2.87-30.34). Poor diet (OR = 1.84, 95% CI, 1.05-3.26) and low self-esteem (OR = 1.80, 95% CI, 0.99-3.31) during adolescence were associated with lower odds of meeting Centers for Disease Control physical activity guidelines in young adulthood. Conclusion: These findings provide targets for future interventional studies to improve physical activity in this high-risk population.

Purpose: In the general population, psychological symptoms frequently co-occur; however, profiles of symptom comorbidities have not been examined among adolescent survivors of childhood cancer. Patients and Methods: Parents of 3,893 5-year survivors of childhood cancer who were treated between 1970 and 1999 and who were assessed in adolescence (age 12 to 17 years) completed the Behavior Problems Index. Age- and sex-standardized z scores were calculated for symptom domains by using the Childhood Cancer Survivor Study sibling cohort. Latent profile analysis identified profiles of comorbid symptoms, and multivariable multinomial logistic regression modeling examined associations between cancer treatment exposures and physical late effects and identified symptom profiles. Odds ratios (ORs) and 95% CIs for latent class membership were estimated and analyses were stratified by cranial radiation therapy (CRT; CRT or no CRT). Results: Four symptoms profiles were identified: no significant symptoms (CRT, 63%; no CRT, 70%); elevated anxiety and/or depression, social withdrawal, and attention problems (internalizing; CRT, 31%; no CRT, 16%); elevated headstrong behavior and attention problems (externalizing; CRT, no observed; no CRT, 9%); and elevated internalizing and externalizing symptoms (global symptoms; CRT, 6%; no CRT, 5%). Treatment with ≥ 30 Gy CRT conferred greater risk of internalizing (OR, 1.7; 95% CI, 1.0 to 2.8) and global symptoms (OR, 3.2; 95% CI, 1.2 to 8.4). Among the no CRT group, corticosteroid treatment was associated with externalizing symptoms (OR, 1.9; 95% CI, 1.2 to 2.8) and ≥ 4.3 g/m 2 intravenous methotrexate exposure was associated with global symptoms (OR, 1.5; 95% CI, 0.9 to 2.4). Treatment late effects, including obesity, cancer-related pain, and sensory impairments, were significantly associated with increased risk of comorbid symptoms. Conclusion: Behavioral, emotional, and social symptoms frequently co-occur in adolescent survivors of childhood cancer and are associated with treatment exposures and physical late effects. Assessment and consideration of symptom profiles are essential for directing appropriate mental health treatment for adolescent survivors.