Preventable harm because of outpatient medication errors among children with leukemia and lymphoma: A multisite longitudinal assessment.

BACKGROUND: There is little longitudinal information about the type and frequency of harm resulting from medication errors among outpatient children with cancer. We aimed to characterize rates and types of medication errors and harm to outpatient children with leukemia and lymphoma over 7 months of treatment. METHODS: We recruited children taking medications at home for leukemia or lymphoma from three pediatric cancer centers. Errors were identified by chart review, in-home medication review, observation of administration, and interviews. Physician reviewers confirmed error (Fleiss' κ = 0.95), harm (Fleiss' κ = 0.82), and suggested interventions. Generalized linear mixed models with random effects were used to account for clustering by site. RESULTS: Among 131 children taking 1669 medications with 367 home visits, 408 errors were identified, including 242 with potential for harm and 39 with harm (1.0 harm per 1000 patient-days [95% CI, 0.1-9.8]). Ten percent of children were injured by errors and 42% had errors with potential for harm. Twenty-six percent of caregivers reported that miscommunication led to missed doses or overdoses at home. Children on >13 medications had significantly more serious medication errors than those on fewer medications (77% vs 61%; p = .05). Physician reviewers judged that improved communication among caregivers and between caregivers and clinicians may have prevented the most harm (66%). CONCLUSIONS: In this longitudinal study, 10% children with leukemia or lymphoma experienced adverse drug events because of outpatient medication errors. Improvements addressing communication with and among caregivers should be codeveloped with families and based on human-factors engineering. PLAIN LANGUAGE SUMMARY: In this longitudinal study, medication errors in the clinic, pharmacy, or at home among children with leukemia or lymphoma over a 7-month period were common, and 10% suffered harm because of errors. Children on >13 medications had significantly more serious medication errors than those on fewer medications (77% vs 61%; p = .05). Physician reviewers judged that improved communication among caregivers and between caregivers and clinicians may have prevented the most harm (66%). Improvements addressing communication with and among caregivers should be codeveloped with families and based on human-factors engineering.

Feasibility of Fitbit Use in Adolescent Survivors of Pediatric Cancer: Who Consistently Uses It and for How Long?

Purpose: Wearable activity trackers with real-time feedback and goal-setting features are being incorporated into programs to increase physical activity among childhood cancer survivors. This analysis describes the adoption and use of a Fitbit® Flex™ among adolescent-aged survivors of childhood cancer without incentives, reminders, or interventions to encourage use. Procedures: Cancer survivors aged 13-18 and ≥2 years from therapy received a Fitbit Flex with instructions to wear it daily. Researchers downloaded participants' daily total steps and active minutes for 1 year. Participants were classified as consistent (≥5 days/week for >4 weeks during the first 12 weeks) or inconsistent users, and comparisons between user types were made. Longitudinal use of the Fitbit and participants' 1-year acceptability evaluations are described. Results: Overall, 67.1% (47/70) of survivors enrolled, and Fitbit data were available for 36 participants. Initially, 30.6% (11/36) were consistent users. Consistent users had lower body mass index z-scores at enrollment (0.4 ± 0.7 vs. 1.2 ± 0.9; p = 0.01), but were otherwise comparable with inconsistent users. Over time survivors' use declined; at 12 months, only one participant was using his or her Fitbit. Survivors who completed a survey (n = 22) reported their Fitbit helped them self-monitor their exercise (72.7%, 16/22) and lead a more active lifestyle (63.6%, 14/22), but found it challenging to charge and not lose, forget about, or break the device. Conclusions: In the real-world setting, only a small subset of adolescent-aged survivors will initially consistently use a Fitbit and their interest diminishes over time. To maximize engagement, interventions incorporating wearable activity trackers likely need to include additional behavior change strategies.

Implementation of Electronic Psychosocial Screening Among Caregivers in Pediatric Oncology.

PURPOSE: This study aimed to evaluate the reach and implementation of an electronic psychosocial screening program among caregivers of pediatric oncology patients, as well as characterize caregiver distress. METHODS: Participants (N = 2,013) included caregivers of patients age 0-17.99 years presenting across 9,280 outpatient oncology visits (median = 2; range = 1-52) from September 2018 to June 2019. At check-ins, caregivers electronically completed the pediatric distress thermometer via a patient-facing electronic health record (EHR) application. Caregiver distress ratings ≥ 8 triggered electronic alerts to medical teams to refer for social work support at point of care. Patient clinical and demographic differences in reach and fidelity were evaluated using univariate chi-square and t-tests. Caregivers reporting high distress were compared with caregivers without reports of high distress using univariate and multivariable logistic regression. RESULTS: The e-screening program was able to reach a caregiver for nearly all children seen during the study period, with 95.5% (1,923/2,013) of patients having a caregiver-completed pediatric distress thermometer. On screeners where caregivers reported high distress, medical teams made appropriate referrals to social work 95.5% (471/493) of the time. Overall, 16.9% (325/1,923) of caregivers ever indicated high distress (score ≥ 8), with caregivers of newly diagnosed (odds ratio = 3.16; 95% CI, 2.12 to 4.71) and on-therapy (odds ratio = 2.81; 95% CI, 2.11 to 3.76) patients being more likely to report high distress, compared with those who were off-treatment for the entire study. CONCLUSION: Leveraging EHR technology to provide evidence-based psychosocial screening can aid in successfully reaching a significant proportion of caregivers of pediatric oncology patients to identify and respond to ongoing psychosocial distress.

Recommendations for the surveillance of education and employment outcomes in survivors of childhood, adolescent, and young adult cancer: A report from the International Late Effects of Childhood Cancer Guideline Harmonization Group.

Educational achievement and employment outcomes are critical indicators of quality of life in survivors of childhood, adolescent, and young adult (CAYA) cancer. This review is aimed at providing an evidence-based clinical practice guideline (CPG) with internationally harmonized recommendations for the surveillance of education and employment outcomes in survivors of CAYA cancer diagnosed before the age of 30 years. The 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 4 existing CPGs, the authors performed a systematic literature search through February 2021. They screened articles for eligibility, assessed quality, and extracted and summarized the data from included articles. The authors formulated recommendations based on the evidence and clinical judgment. There were 3930 articles identified, and 83 of them, originating from 17 countries, were included. On a group level, survivors were more likely to have lower educational achievement and more likely to be unemployed than comparisons. Key risk factors for poor outcomes included receiving a primary diagnosis of a central nervous system tumor and experiencing late effects. The authors recommend that health care providers be aware of the risk of educational and employment problems, implement regular surveillance, and refer survivors to specialists if problems are identified. In conclusion, this review presents a harmonized CPG that aims to facilitate evidence-based care, positively influence education and employment outcomes, and ultimately minimize the burden of disease and treatment-related late adverse effects for survivors of CAYA cancers. LAY SUMMARY: A multidisciplinary panel has developed guidelines for the surveillance of education and employment outcomes among survivors of childhood, adolescent, and young adult cancer. On the basis of evidence showing that survivors are at risk for lower educational achievement and unemployment, it is recommended that all survivors receive regular screening for educational and employment outcomes.

Childhood cancer survivorship care during the COVID-19 pandemic: an international report of practice implications and provider concerns.

PURPOSE: Long-term follow-up (LTFU) care is essential to optimise health outcomes in childhood cancer survivors (CCS). We aimed to assess the impact of the COVID-19 pandemic on LTFU services and providers. METHODS: A COVID-19 working group within the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG) distributed a questionnaire to LTFU service providers in 37 countries across Europe, Asia, North America, Central/South America, and Australia. The questionnaire assessed how care delivery methods changed during the pandemic and respondents' level of worry about the pandemic's impact on LTFU care delivery, their finances, their health, and that of their family and friends. RESULTS: Among 226 institutions, providers from 178 (79%) responded. Shortly after the initial outbreak, 42% of LTFU clinics closed. Restrictions during the pandemic resulted in fewer in-person consultations and an increased use of telemedicine, telephone, and email consultations. The use of a risk assessment to prioritise the method of LTFU consultation for individual CCS increased from 12 to 47%. While respondents anticipated in-person consultations to remain the primary method for LTFU service delivery, they expected significantly increased use of telemedicine and telephone consultations after the pandemic. On average, respondents reported highest levels of worry about psychosocial well-being of survivors. CONCLUSIONS: The pandemic necessitated changes in LTFU service delivery, including greater use of virtual LTFU care and risk-stratification to identify CCS that need in-person evaluations. IMPLICATIONS FOR CANCER SURVIVORS: Increased utilisation of virtual LTFU care and risk stratification is likely to persist post-pandemic.

Psychosocial Functioning Among Caregivers of Childhood Cancer Survivors Following Treatment Completion.

OBJECTIVE: To inform efforts to better support caregivers of children with cancer during the transition from treatment to survivorship, this study sought to characterize caregiver mental health-related quality of life (HRQOL) and anxiety, and examine the influence of family psychosocial risk and caregiver problem-solving on these outcomes. METHOD: Participants included 124 caregivers (child age M = 10.05 years; SD = 4.78), 12-19 months from the conclusion of cancer-directed treatment. Participants' self-reported mental HRQOL, anxiety, and problem-solving were compared with community norms using t-tests. Correlations and hierarchical multiple regressions examined the influence of psychosocial risk and problem-solving on caregiver mental HRQOL and anxiety. RESULTS: Overall, caregivers reported HRQOL and anxiety within normal limits. Caregivers also reported more adaptive patterns of problem-solving than community norms. Subsets of caregivers reported clinical levels of psychosocial risk (11%) and at-risk levels of mental HRQOL (2.5%) and anxiety (5.7%). Females reported greater anxiety than males. Psychosocial risk and negative problem orientation (NPO) were both related to poorer mental HRQOL and greater anxiety (r = .40-.51, p's < .001). Positive problem orientation related to better mental HRQOL and lower anxiety (r = .18-.21, p's < .05). Impulsivity/carelessness and avoidance were associated with greater anxiety (r = .19-.25, p's < .05). Only NPO accounted for additional variance in mental HRQOL and anxiety, over and above psychosocial risk and demographic characteristics. CONCLUSIONS: The majority of caregivers appear to be resilient and experience limited distress during the off therapy period. Targeting negative cognitive appraisals (NPO) through cognitive-behavioral therapy or problem-solving skills training may further improve caregiver psychosocial functioning.

Using formative evaluation to plan for electronic psychosocial screening in pediatric oncology.

OBJECTIVE: To demonstrate how formative research methods can be used to plan for implementation of evidence-based psychosocial screening in pediatric oncology. METHODS: Multidisciplinary pediatric oncology professionals participated in focus groups to adapt the distress thermometer for electronic administration and develop health systems processes to promote psychosocial screening in the pediatric oncology outpatient clinic setting. Seven 1-hour focus groups were conducted using a structured guide based on the reach, efficacy, adoption, implementation, and maintenance framework and transcribed verbatim. Two independent raters coded transcripts using a quasi-deductive approach with high inter-coder reliability (Cohen kappa >0.80). RESULTS: Participants' (N = 44) responses were used to identify overarching topics related to the adoption, implementation, and maintenance of electronic screening (e-screening) including: barriers to meeting families' psychosocial needs, identification of champions, suggestions to adapt the proposed e-screening program, perceived barriers to e-screening, and potential impact of carrying out e-screening. Following review of qualitative data, we employed specific implementation strategies to promote adoption, implementation, and maintenance of an e-screening program. CONCLUSIONS: Perceived barriers to the implementation of psychosocial screening remain substantial, yet enthusiasm for using electronic health records (EHRs) technology to help meet patient needs through regular assessment was evident among pediatric oncology professionals. Electronic administration of screening and integration of results into the EHR in real time were identified as critical needs to overcome barriers to e-screening. Formative research including qualitative data from stakeholders can be used to tailor implementation strategies to successfully support the adoption, implementation, and maintenance of e-screening programs in pediatric oncology.

Recommendations for the surveillance of cancer-related fatigue in childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group.

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.

Mental health among nonelderly adult cancer survivors: A national estimate.

BACKGROUND: This study assessed mental health (MH) outcomes across age groups in a nationally representative US sample of adult cancer survivors. METHODS: The 2015 to 2017 National Survey on Drug Use and Health was used to identify respondents aged 18 to 64 years. The authors compared MH outcomes between respondents with a cancer history and respondents without a cancer history in adjusted analyses controlling for demographics and socioeconomic status. Outcomes included past-year major depressive episodes, serious psychological distress, suicidal thoughts, suicidal plans, suicidal attempts, any mental illness, and serious mental illness. All analyses were stratified by age group (18-34, 35-49, or 50-64 years). RESULTS: In a comparison of 2656 survivors and 112,952 individuals without cancer, within each age group, survivors had an elevated prevalence of MH problems in 5 of the 7 outcome measures. Among young adults (aged 18-34 years), survivors were more likely than noncancer counterparts to experience major depressive episodes (18.1% vs 9.6%), serious psychological distress (34.2% vs 17.9%), suicidal thoughts (10.5% vs 7.0%), any mental illness (41.1% vs 23.3%), and serious mental illness (13.2% vs 5.9%) in the past year (P values <.05). These differences persisted in adjusted analyses (P values <.01). Similar survivor-comparison differences were observed among older groups but with a smaller magnitude. Among survivors, young adult survivors had the highest likelihood of experiencing MH problems across all outcomes (P values <.05). CONCLUSIONS: This population-based study shows an elevated prevalence of MH problems among adult cancer survivors in comparison with the general population. This finding highlights the importance of developing strategies to ensure the early detection of mental illness and to improve access to MH treatment for cancer survivors.

Systematic Review of Health Literacy in Childhood Cancer Patients, Survivors, and Their Caregivers.

OBJECTIVE: This systematic review examined the literature regarding health literacy among pediatric cancer patients, survivors, and their caregivers. Specific aims were to identify and summarize measures used, levels of and demographic correlates of health literacy, effects of health literacy interventions, and associations between health literacy and health outcomes. METHODS: The search strategy was executed in the following databases: PubMed, EMBASE, PsycINFO, CINAHL, ERIC, and the Cochrane Library. Of the 842 unique studies retrieved, 9 met the inclusion criteria and were included in the systematic review. RESULTS: Studies used a variety of validated and study-specific measures with no measure emerging as the standard. Levels of health literacy were typically assessed subjectively and across studies the majority of those sampled self-reported adequate health literacy. Few studies examined demographic correlates of health literacy, precluding the identification of consistent predictors. Health literacy intervention research for this population is in its infancy and only pilot projects were identified; effects could not be evaluated. No studies assessed the impact of health literacy on health outcomes. CONCLUSIONS: Very few studies assessed health literacy in pediatric oncology. As treatment for childhood cancer becomes increasingly complex, and patients and caregivers are expected to have adequate understanding of health information, health literacy is a critical construct that should not be overlooked.

Educational Intervention to Address Infertility-Related Knowledge Gaps Among Adolescent and Young Adult Survivors of Childhood Cancer.

Purpose: This study evaluates the impact of a personalized educational session on survivors' knowledge of risk for infertility and describes preferences for reproductive health care. Methods: This was a two-phase prospective study of an individualized education session for adolescent and young adult (AYA) survivors aged 18-21 years. Sessions used sex-specific visual aids (phase I) or a personalized handout (phase II). Surveys assessing knowledge of overall risk for infertility (yes/no), level of risk (none, low, moderate, or high), relative impact of treatment on the window of fertility (same/less than peers), and the need to use protection to prevent pregnancy (yes/no) were completed at baseline and 1-month follow-up. Changes in knowledge were assessed using McNemar's test. Preferences for fertility education and fertility status assessment were ascertained. Results: In phase I (n = 44), the educational intervention improved knowledge on the impact on the fertility window (from 69.7% correct responses to 90.9%; p = 0.03). In phase II (n = 54), the addition of a personalized, take-home visual aid significantly improved knowledge across all four concepts: knowledge of risk (68.4%-93.1%; p = 0.03), risk level (39.5%-86.8%; p < 0.001), impact on the fertility window (55.3%-86.8%; p = 0.003), and protection for pregnancy prevention (62.2%-81.1%; p = 0.03). Nearly all males (97%) and 66% of females preferred private sessions. The majority of survivors (73%) would like to undergo fertility status testing in the next 5 years. Conclusion: In this sample of AYA cancer survivors, individualized education sessions with personalized visual aids and assessment of survivors' understanding of information significantly improved knowledge of key reproductive health concepts.

Scalability of cancer SurvivorLink™: A cluster randomized trial among pediatric cancer clinics.

BACKGROUND: Children diagnosed with cancer are living longer and the survivor population is growing. However, most survivors develop late effects of radiation and chemotherapy shortly to years after completion of therapy, and the receipt of follow-up visits that are recommended by the Children's Oncology Group (COG) is suboptimal nationally. AIMS: The aims of this study are to: 1) evaluate the impact of a patient-controlled electronic personal health record (ePHR) and system (SurvivorLink) on care visit attendance, risk-based surveillance, and other secondary outcomes (i.e., patient activation, quality of life (QOL)); 2) measure the use, acceptability, and perceived usefulness of, and satisfaction with SurvivorLink; and 3) assess facilitators and barriers to implementation. METHODS: This hybrid effectiveness-implementation, clustered randomized control trial (RCT) evaluates the effect of SurvivorLink among pediatric cancer survivors and their parents on receipt of follow-up cancer care. We will recruit 20 pediatric survivor clinics with half receiving the intervention and half acting as a waitlist control. Parents of survivors and survivors will complete baseline, 3 and 12 month surveys that assess SurvivorLink use, patient self-efficacy, and intentions to return for follow-up. We will use mixed methods and multi-informant assessment to assess implementation outcomes (i.e., acceptability, feasibility, appropriateness). DISCUSSION: New approaches are needed to facilitate the receipt of long-term follow-up care among pediatric cancer survivors. This study will assess whether SurvivorLink is effective in increasing receipt of follow-up cancer care. Moreover, it will explore the influences of context and other moderators of clinical practice change in pediatric cancer survivorship.

Readiness for transition and health-care satisfaction in adolescents with complex medical conditions.

BACKGROUND: The purpose of this study is to examine contributions to patient perceptions of transition readiness and satisfaction with care amongst adolescents and young adults (AYAs) with complex health conditions engaging in paediatric care. METHODS: Participants included 94 patients aged 14-20 years (M = 16.41, SD = 1.56) with cystic fibrosis (n = 31), sickle cell disease (n = 27), and solid organ transplants (n = 36). Participants completed self-report questionnaires and medical providers completed measures of their medication regimen complexity. One-way analysis of variance compared differences between disease groups on study variables. Pearson product-moment correlation coefficients and linear regression models evaluated factors associated with AYA reported transition readiness and satisfaction with health care. RESULTS: There were no significant differences between disease groups on patient-reported transition readiness, barriers to medication adherence, health care self-management, or satisfaction. Patient age, self-reported health-care responsibility, medication barriers, and academic performance predicted a large portion of the variance in AYA perceptions of transition readiness (R2  = 0.27, F (4, 83) = 7.74, p < 0.001, Cohen's f2 = 0.37). Patient gender, self-reported health-care responsibility, and medication barriers predicted a medium portion of the variance in AYA satisfaction with health care (R2  = 0.23, F (3, 88) = 8.56, p < 0.001, Cohen's f2 = 0.30). CONCLUSIONS: Patient perceptions of health care self-management and barriers to medication adherence are important predictors of readiness for transition and satisfaction with care. Considering a holistic approach that includes these factors allows for improved understanding of individual needs for transition interventions that can improve adult outcomes for individuals with complex health conditions.

Knowledge of Late Effects Risks and Healthcare Responsibility in Adolescents and Young Adults Treated for Childhood Cancer.

OBJECTIVE: This study aimed to examine the level and predictors of knowledge of late effects risks from childhood cancer treatment in adolescent and young adult (AYA) survivors. METHODS: Seventy-three AYAs, aged 14-21, completed measures of knowledge of late effect risks, executive functioning, and responsibility for health self-management. Sixty-seven parents of these AYA survivors (91.7%) also participated. RESULTS: Survivors demonstrated poor knowledge of their unique risks for treatment-related late effects, with a mean accurate knowledge score of 54.29% (SD = 24.19%). The number of late effects for which survivors were at risk was negatively correlated with risk knowledge (r = -.34, p < .01). Survivors' executive functioning was not related to risk knowledge. In regression analyses, survivor age positively predicted accurate knowledge of late effects risks, and the number of late effects risk was a negative predictor. In separate models, survivor self-report of AYA responsibility for health self-management did not predict knowledge (R2 = .39, F = 10.86, p < .01), but parent proxy-report was a significant positive predictor (R2 = .38, F = 9.62, p < .01). Parental involvement was not a significant predictor in either model. CONCLUSION: There are significant knowledge gaps among AYA survivors of childhood cancer, which appear to be related to younger AYA age and lower levels of AYA responsibility for health self-management. Additional intervention is critical to increase AYA knowledge of their risk for late effects in order to promote continued engagement in long-term follow-up care and surveillance across the lifespan.

Evidence for increased surveillance of executive functioning in adolescent and young adult survivors of childhood cancer.

Comprehensive long-term follow-up (LTFU) for survivors of childhood cancer is critical for reducing morbidity and mortality. Current standards recommend screening all survivors for psychological and academic problems and certain survivors for neurocognitive problems based upon treatment exposures. This study aimed to determine if differences exist in executive functioning (EF) based on treatment exposures and characterize relationships between EF, treatment exposure, and internalizing problems. Participants included adolescent and young adult (AYA) survivors (N = 70) of non-central nervous system cancer, aged 14-21 presenting for LTFU. Patient-reported data were obtained on survivors' EF, internalizing symptoms, academic performance, and educational supports. Children's Oncology Group's LTFU Guidelines classified survivors as at risk or not at risk for neurocognitive deficits based on treatment exposures. Group differences, relationships, and moderation by risk group were examined. No differences were found in EF, internalizing symptoms, academic performance, or educational supports between survivors who were at risk versus those not at risk for neurocognitive deficits. Problems with EF predicted internalizing symptoms, an effect that was moderated by risk group (R2= .64 for AYA self-report; R2 = .38 for parent-proxy report). Survivors with poorer EF experienced higher levels of internalizing symptoms. These data indicate that current screening practices may not identify survivors who are not at risk for neurocognitive deficits, yet struggle with EF. Survivor care providers should consider universal screening for EF problems in AYAs, regardless of treatment exposure history. Clinical assessment of internalizing problems in survivors with EF problems is also recommended.

Perceptions of risk of infertility among male survivors of childhood cancer: A report from the Childhood Cancer Survivor Study.

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.

Factors associated with physical activity among adolescent and young adult survivors of early childhood cancer: A report from the childhood cancer survivor study (CCSS).

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.

Meaningful Use of an Electronic Personal Health Record (ePHR) among Pediatric Cancer Survivors.

Background and Objectivs: Survivors of pediatric and adolescent cancer are at an increased risk of chronic and debilitating health conditions and require life-long specialized care. Stand-alone electronic personal health records (ePHRs) may aid their self-management. This analysis characterizes young adult survivors and parents who meaningfully use an ePHR, Cancer SurvivorLinkTM, designed for survivors of pediatric and adolescent cancer. METHODS: This was a retrospective observational study of patients seen at a pediatric survivor clinic for annual survivor care. Young adult survivors and/or parent proxies for survivors <18 years old who completed ePHR registration prior to their appointment or within 90 days were classified as registrants. Registrants who uploaded or downloaded a document and/or shared their record were classified as meaningful users. RESULTS: Overall, 23.7% (148/624) of survivors/parents registered and 38% of registrants used SurvivorLink meaningfully. Young adult registrants who transferred to adult care during the study period were more likely to be meaningful users (aOR: 2.6 (95% CI: 1.1, 6.1)) and used the ePHR twice as frequently as those who continued to receive care in our institution's pediatric survivor clinic. Among survivors who continued to receive care at our institution, being a registrant was associated with having an annual follow-up visit (aOR: 2.6 (95% CI: 1.2, 5.8)). CONCLUSIONS: While ePHRs may not be utilized by all survivors, SurvivorLink is a resource for a subset and may serve as an important bridge for patients who transfer their care. Using SurvivorLink was also associated with receiving recommended annual survivor care.

Perceptions of Infertility Risks Among Female Pediatric Cancer Survivors Following Gonadotoxic Therapy.

Research has established that childhood cancer treatments can place survivors at risk for reproductive health problems, yet little is known about pediatric survivors' perceptions of their risk for infertility and worry about future family planning. The purpose of this study was to explore factors that affect awareness of risk for and worry about infertility among female pediatric cancer survivors aged 10 to 21 (N=48) and their parents (N=41) following exposure to treatments associated with reproductive late effects. The majority of female childhood cancer survivors (71%) and their parents (95%) reported worry about infertility following gonadotoxic therapy. Cross-sectional data indicated that survivors' awareness of risk for and worry about infertility increase during adolescence, whereas parents' awareness of risk and worry generally remain constant throughout their daughters' development. Survivor worry about infertility was predicted by a variety of factors, yet parent worry about infertility was only associated with increased gonadotoxic radiation exposure. Overall, these findings reinforce the necessity of developmentally appropriate education about reproductive health risks and fertility preservation options across the continuum of pediatric oncology care from diagnosis to survivorship.