Health Insurance Navigation Tools Intervention: A Pilot Trial Within the Childhood Cancer Survivor Study.

PURPOSE: Childhood cancer survivors are at increased risk for underinsurance and health insurance-related financial burden. Interventions targeting health insurance literacy (HIL) to improve the ability to understand and use health insurance are needed. METHODS: We codeveloped a four-session health insurance navigation tools (HINT) intervention, delivered synchronously by a patient navigator, and a corresponding booklet. We conducted a randomized pilot trial with survivors from the Childhood Cancer Survivor Study comparing HINT with enhanced usual care (EUC; booklet). We assessed feasibility, acceptability, and preliminary efficacy (HIL, primary outcome; knowledge and confidence with health insurance terms and activity) on a 5-month survey and exit interviews. RESULTS: Among 231 invited, 82 (32.5%) survivors enrolled (53.7% female; median age 39 years, 75.6% had employer-sponsored insurance). Baseline HIL scores were low (mean = 28.5; 16-64; lower scores better); many lacked knowledge of Affordable Care Act (ACA) provisions. 80.5% completed four HINT sessions, and 93.9% completed the follow-up survey. Participants rated HINT's helpfulness a mean of 8.9 (0-10). Exit interviews confirmed HINT's acceptability, specifically its virtual and personalized delivery and helpfulness in building confidence in understanding one's coverage. Compared with EUC, HINT significantly improved HIL (effect size = 0.94. P < .001), ACA provisions knowledge (effect size = 0.73, P = .003), psychological financial hardship (effect size = 0.64, P < .006), and health insurance satisfaction (effect size = 0.55, P = .03). CONCLUSION: Results support the feasibility and acceptability of a virtual health insurance navigation program targeted for childhood survivors to improve HIL. Randomized trials to assess the efficacy and sustainability of health insurance navigation on HIL and financial burden are needed.

Material, behavioral, and psychological financial hardship among survivors of childhood cancer in the Childhood Cancer Survivor Study.

BACKGROUND: Medical financial burden includes material, behavioral, and psychological hardship and has been underinvestigated among adult survivors of childhood cancer. METHODS: A survey from 698 survivors and 210 siblings from the Childhood Cancer Survivor Study was analyzed. The intensity of financial hardship was estimated across 3 domains: 1) material, including conditions that arise from medical expenses; 2) behavioral, including coping behaviors to manage medical expenses; and 3) psychological hardship resulting from worries about medical expenses and insurance, as measured by the number of instances of each type of financial hardship (0, 1-2, and ≥3 instances). Multivariable logistic regressions were conducted to examine the clinical and sociodemographic predictors of experiencing financial hardship (0-2 vs ≥3 instances). RESULTS: The intensity of financial hardship did not significantly differ between survivors and siblings. Survivors reported more instances of material hardship than siblings (1-2 instances: 27.2% of survivors vs 22.6% of siblings; ≥3 instances: 15.9% of survivors vs 11.4% siblings; overall P = .03). In multivariable regressions, insurance was protective against all domains of financial hardship (behavioral odds ratio [OR], 0.12; 95% confidence interval [CI], 0.06-0.22; material OR, 0.37; 95% CI, 0.19-0.71; psychological OR, 0.10; 95% CI, 0.05-0.21). Survivors who were older at diagnosis, female, and with chronic health conditions generally had higher levels of hardship. Brain radiation and alkylating agents were associated with higher levels of hardship. CONCLUSIONS: Material, behavioral, and psychological financial burden among survivors of childhood cancer is common.

Autism and General Developmental Screening Practices Among Primary Care Providers.

OBJECTIVE: Using standardized screening tools increases accuracy in early identification of autism. The American Academy of Pediatrics recommends systematic developmental screening at all 9-, 18-, and 24- or 30-month well-child visits (WCVs) and autism-specific screening at all 18- and 24-month WCVs. The study objectives were to examine the extent to which these guidelines have been adopted in practice among primary care providers (PCPs) and to identify potential provider-level factors associated with screening practices. METHOD: Participants included 94 PCPs (79% pediatricians) from 13 states enrolled in a study of an autism training program. Self-report and chart-review data collected before training were examined. Screening practices were assessed through chart review of all 9-, 18-, and 24-month WCVs within a 30-day window. RESULTS: Sixty-four percent of PCPs administered developmental screening tools at all 9-month WCVs, and 62% at all 18-month WCVs. Fifty-one percent administered autism screening tools at all 18-month WCVs, and 41% at all 24-month WCVs. Screening practices varied by provider type (pediatrician vs other PCP), self-efficacy in screening and identification, and previous autism training (autism screening only), but not by years of experience. CONCLUSION: Overall, general developmental and autism-specific screenings are not being consistently administered across recommended WCVs in primary care practices. Provider self-efficacy in autism identification and screening and previous autism training were associated with increased autism screening. As such, these results suggest a need for increased training and dissemination of information on screening implementation for practicing PCPs.

An Exploration of Health Behaviors in a Mind-Body Resilience Intervention for Parents of Children with Developmental Disabilities.

OBJECTIVE: Parents of children with special needs such as learning and attentional disabilities (LADs) and autism spectrum disorder (ASD) are at high risk for stress-related disorders. The demands of parenting may compete with time for self-care behaviors such as physical activity, healthy eating, and adequate sleep. The objective was to describe health behaviors among this understudied population and assess the changes after a resilience intervention. METHODS: This was a secondary data analysis of a randomized controlled pilot virtual mind-body resilience intervention (Stress Management and Resiliency Training: A Relaxation Response Resiliency Program) trial for parents of children with LADs (n = 52) and ASD (n = 47). Parents completed self-report questionnaires about their weekly physical activity, eating behaviors, sleep duration, and fatigue before and after the 8-week intervention. Descriptive statistics and pre-post intervention effect sizes (Cohen's d) were calculated. RESULTS: Both parent groups reported suboptimal levels of health behaviors at baseline, but ASD parents reported lower health behaviors than LAD parents. LAD parents improved more on physical activity, with a higher percentage meeting recommendations at postintervention follow-up (d = 0.71) than ASD parents (d = 0.01). Eating behaviors showed small effect size improvements for both groups. Although sleep duration improved only with small or medium effect sizes for both groups, ASD parents rated their fatigue lower after the intervention (d = 0.81). CONCLUSION: Parents of children with special needs who participated in a virtual resilience intervention demonstrated suboptimal health behaviors. There is a need for targeted interventions for health behaviors that can promote resilience in these high-stress populations.

Effectiveness of the Extension for Community Health Outcomes Model as Applied to Primary Care for Autism: A Partial Stepped-Wedge Randomized Clinical Trial.

Importance: The Extension for Community Health Outcomes (ECHO) model is a widely adopted technology-based model for training primary care physicians and practitioners (PCPs) to care for patients with complex conditions. Despite its popularity, to our knowledge, direct effects of ECHO on clinical practice have not been tested in a large-scale study. Objective: To test the effectiveness of the ECHO model as applied to primary care for autism and whether it resulted in improved clinical practice, knowledge, and self-efficacy regarding autism screening and comorbidity management. Design, Setting, and Participants: Primary care physicians and practitioners were recruited to participate in a 6-month ECHO Autism program delivered by 1 of 10 academic medical center sites. A sequential, staggered rollout of ECHO Autism was delivered to 5 cohorts of participants (15 per site; 2 sites per cohort). Sites were randomized after recruitment to cohort/start time. Cohorts launched every 3 months. The ECHO Autism program used videoconferencing technology to connect community-based PCPs with interdisciplinary expert teams at academic medical centers. There were 148 participants (PCPs [family practice physicians, pediatricians, nurse practitioners, and physician assistants] providing outpatient services to underserved children) studied between December 2016 and November 2018. Interventions: The 6-month ECHO Autism program included twelve 2-hour sessions connecting PCP participants with an interdisciplinary expert team. Sessions included didactics, case-based learning, guided practice, and discussion. Main Outcomes and Measures: Coprimary outcomes were autism screening practices and comorbidity management (assessed by medical record review). Secondary outcomes were knowledge (assessed by direct testing) and self-efficacy (assessed by self-report survey). Assessments were conducted at baseline, mid-ECHO, post-ECHO, and follow-up (3 months after ECHO). Results: Ten sites were randomized to 1 of 5 cohorts. Participants were 82% female (n = 108), 76% white (n = 100), and 6% Hispanic or Latino (n = 8); the median age was 46 years (interquartile range, 37-55 years). Significant changes in autism screening and treatment of comorbidities in children with autism were not observed. Participants demonstrated significant improvements in knowledge (9%; 95% CI, 4-13; P < .001) and self-efficacy (29%; 95% CI, 25-32; P < .001). Conclusions and Relevance: The ECHO model was developed to increase access to high-quality health care for underserved patients with complex conditions. Study results provide support for the model in improving clinician knowledge and confidence but little support for achieving practice change. Trial Registration: ClinicalTrials.gov Identifier: NCT03677089.

Long-term health-related quality of life in pediatric brain tumor survivors receiving proton radiotherapy at <4 years of age.

BACKGROUND: The purpose of this analysis is to report long-term health-related quality of life (HRQoL) among brain tumor survivors treated with proton therapy (PRT) at a very young age. METHODS: Fifty-nine children <4 years old received PRT between 2000 and 2011. Forty families participated. HRQoL was assessed by child self-report (CSR; age ≥5) and parent proxy report (PPR; age 2+) using the PedsQL Core. RESULTS: The median age was 2.5 years (range, 0.3-3.8) at PRT and 9.1 years (5.5-18) at last follow-up. The most common diagnoses were ependymoma (n = 22) and medulloblastoma (n = 7). Median follow-up is 6.7 years (3-15.4). Follow-up mean CSR and PPR scores were: total core (78.4 and 72.9), physical (82.9 and 75.2), psychosocial (76.0 and 71.6), emotional (74.4 and 70.7), social (81.2 and 75.1), and school (72.4 and 69.9). Parent-reported HRQoL fell within a previously defined range for healthy children in 37.5% of patients, and for children with severe health conditions in 45% of patients. PPR HRQoL was stable from baseline to last follow-up among all domains except for social functioning. History of gastrostomy tube was significantly associated with poorer CSR and PPR HRQoL on multivariable analysis. Ninety percent of children functioned in a regular classroom, 14 (36%) used a classroom aid, 9 (23%) used an outside tutor, and 18 (46%) had an individualized education plan. CONCLUSION: Long-term HRQoL among brain tumor survivors treated with PRT at a very young age is variable, with over a third achieving HRQoL levels commensurate with healthy children. KEY POINTS: 1. One third of survivors reported long-term HRQoL scores comparable to those of healthy children.2. Treatment for hydrocephalus or a feeding tube was associated with significantly lower HRQoL.3. Total core HRQoL scores remained stable from baseline to last follow-up.

Hospital Readmission of Adolescents and Young Adults With Complex Chronic Disease.

Importance: Adolescents and young adults (AYA) who have complex chronic disease (CCD) are a growing population that requires hospitalization to treat severe, acute health problems. These patients may have increased risk of readmission as demands on their self-management increase and as they transfer care from pediatric to adult health care practitioners. Objective: To assess variation across CCDs in the likelihood of readmission for AYA with increasing age. Design, Setting, and Participants: Retrospective 1-year cross-sectional study of the 2014 Agency for Healthcare Research and Quality Nationwide Readmissions Database for all US hospitals. Participants were 215 580 hospitalized individuals aged 15 to 30 years with cystic fibrosis (n = 15 213), type 1 diabetes (n = 86 853), inflammatory bowel disease (n = 48 073), spina bifida (n = 7819), and sickle cell anemia (n = 57 622) from January 1, 2014, to December 1, 2014. Exposures: Increasing age at index admission. Main Outcomes and Measures: Unplanned 30-day hospital readmission. Readmission odds were compared by patients' ages in 2-year epochs (with age 15-16 years as the reference) using logistic regression, accounting for confounding patient characteristics and data clustering by hospital. Results: Of 215 580 participants, 115 982 (53.8%) were female; the median (interquartile range) age was 24 (20-27) years. Across CCDs, multimorbidity was common; the percentages of index hospitalizations with 4 or more coexisting conditions ranged from to 33.4% for inflammatory bowel disease to 74.2% for spina bifida. Thirty-day hospital readmission rates varied significantly across CCDs: 20.2% (cystic fibrosis), 19.8% (inflammatory bowel disease), 20.4% (spina bifida), 22.5% (type 1 diabetes), and 34.6% (sickle cell anemia). As age increased from 15 to 30 years, unadjusted, 30-day, unplanned hospital readmission rates increased significantly for all 5 CCD cohorts. In multivariable analysis, age trends in the adjusted odds of readmission varied across CCDs. For example, for AYA who had cystic fibrosis, the adjusted odds of readmission increased to 1.9 (95% CI, 1.5-2.3) by age 21 years and remained elevated through age 30 years. For AYA who had type 1 diabetes, the adjusted odds of readmission peaked at ages 23 to 24 years (odds ratio, 2.3; 95% CI, 2.1-2.6) and then declined through age 30 years. Conclusions and Relevance: These findings suggest that hospitalized AYA who have CCDs have high rates of multimorbidity and 30-day readmission. The adjusted odds of readmission for AYA varied significantly across CCDs with increasing age. Further attention is needed to hospital discharge care, self-management, and prevention of readmission in AYA with CCD.

Quality of life in patients with proton-treated pediatric medulloblastoma: Results of a prospective assessment with 5-year follow-up.

BACKGROUND: To the authors' knowledge, health-related quality of life (HRQOL) outcomes are not well described in patients with medulloblastoma. The use of proton radiotherapy (RT) may translate into an improved HRQOL. In the current study, the authors report long-term HRQOL in patients with proton-treated pediatric medulloblastoma. METHODS: The current study was a prospective cohort HRQOL study of patients with medulloblastoma who were treated with proton RT and enrolled between August 5, 2002, and October 8, 2015. Both child report and parent-proxy report Pediatric Quality of Life Inventory (PedsQL) surveys were collected at baseline during RT and annually thereafter (score range on surveys of 0-100, with higher scores indicating better HRQOL). Patients were dichotomized by clinical/treatment variables and subgroups were compared. Mixed-model analysis was performed to determine the longitudinal trajectory of PedsQL scores. The Student t test was used to compare long-term HRQOL measures with published means from a healthy child population. RESULTS: Survey data were evaluable for 116 patients with a median follow-up of 5 years (range, 1-10.6 years); the median age at the time of diagnosis was 7.6 years (range, 2.1-18.1 years). At baseline, children reported a total core score (TCS) of 65.9, which increased by 1.8 points annually (P<.001); parents reported a TCS of 59.1, which increased by 2.0 points annually. Posterior fossa syndrome adversely affected baseline scores, but these scores significantly improved with time. At the time of last follow-up, children reported a TCS of 76.3, which was 3.3 points lower than that of healthy children (P = .09); parents reported a TCS of 69, which was 11.9 points lower than that of parents of healthy children (P<.001). Increased follow-up time from diagnosis correlated with improved HRQOL scores. CONCLUSIONS: HRQOL scores appear to increase over time after treatment in children treated with proton RT for medulloblastoma but remain lower compared with those of parent-proxy reports as well as published means from a healthy normative sample of children. Additional follow-up may translate into continued improvements in HRQOL. Cancer 2018. © 2018 American Cancer Society.

Insurance, chronic health conditions, and utilization of primary and specialty outpatient services: a Childhood Cancer Survivor Study report.

PURPOSE: Survivors of childhood cancer require life-long outpatient healthcare, which may be impacted by health insurance. This study sought to understand survivors' utilization of outpatient healthcare provider services. METHODS: The study examined cross-sectional survey data using an age-stratified sample from the Childhood Cancer Survivor Study of self-reported annual use of outpatient services. Multivariable logistic regression analyses were used to identify risk factors associated with utilization of services. RESULTS: Six hundred ninety-eight survivors were surveyed, median age 36.3 years (range 22.2-62.6), median time from diagnosis 28.8 years (range 23.1-41.7). Almost all (93%) of survivors had at least one outpatient visit during the previous year; 81.3% of these visits were with a primary care providers (PCP), 54.5% were with specialty care physicians, 30.3% were with nurse practitioner/physician's assistants (NP/PA), and 14.2% were with survivorship clinic providers. Survivors with severe to life-threatening chronic health conditions had greater odds of utilizing a specialty care physician (OR = 5.15, 95% CI 2.89-9.17) or a survivorship clinic (OR = 2.93, 95% CI 1.18-7.26) than those with no chronic health conditions. Having health insurance increased the likelihood of seeking care from NP/PA (private, OR = 2.76, 95% CI 1.37-5.58; public, OR = 2.09, 95% CI 0.85-5.11), PCP (private, OR = 7.82, 95% CI 3.80-13.10; public, OR = 7.24, 95% CI 2.75-19.05), and specialty care (private, OR = 2.96, 95% CI 1.48-5.94; public, OR = 2.93, 95% CI 1.26-6.84) compared to without insurance. CONCLUSION: Most childhood cancer survivors received outpatient care from a PCP, but a minority received care from a survivorship clinic provider. Having health insurance increased the likelihood of outpatient care. IMPLICATIONS FOR CANCER SURVIVORS: Targeted interventions in the primary care setting may improve risk-based, survivor-focused care for this vulnerable population.

Mental health insurance access and utilization among childhood cancer survivors: a report from the childhood cancer survivor study.

PURPOSE: To describe and compare the prevalence of mental health access, preference, and use among pediatric cancer survivors and their siblings. To identify factors associated with mental health access and use among survivors. METHODS: Six hundred ninety-eight survivors in the Childhood Cancer Survivor Study (median age = 39.4; median years from diagnosis = 30.8) and 210 siblings (median age = 40.4) were surveyed. Outcomes included having mental health insurance coverage, delaying care due to cost, perceived value of mental health benefits, and visiting a mental health provider in the past year. RESULTS: There were no differences in mental health access, preferences, and use between survivors and siblings (p > 0.05). Among respondents with a history of distress, most reported not having seen a mental health provider in the past year (80.9% survivors vs. 77.1% siblings; p = 0.60). Uninsured survivors were more likely to defer mental health services due to cost (24.6 vs. 8.4%; p < 0.001). In multivariable models, males (OR = 2.96) and survivors with public (OR = 6.61) or employer-sponsored insurance (ESI; OR = 14.37) were more likely to have mental health coverage. CONCLUSIONS: Most childhood cancer survivors value having mental healthcare benefits; however, coverage and use of mental health services remain suboptimal. The most vulnerable of survivors, specifically the uninsured and those with a history of distress, are at risk of experiencing challenges accessing mental health care. IMPLICATIONS FOR CANCER SURVIVORS: Childhood cancer survivors are at risk for experiencing high levels of daily life stress that is compounded by treatment-related sequelae. Integrative, system-based approaches that incorporate financial programs with patient education about insurance benefits can help reduce some of the financial barriers survivors face.

Patterns in Health Care Access and Affordability Among Cancer Survivors During Implementation of the Affordable Care Act.

Importance: Cancer survivors face ongoing health issues and need access to affordable health care, yet studies examining health care access and affordability in this population are lacking. Objectives: To evaluate health care access and affordability in a national sample of cancer survivors compared with adults without cancer and to evaluate temporal trends during implementation of the Affordable Care Act. Design, Setting, and Participants: We used data from the National Health Interview Survey from 2010 through 2016 to conduct a population-based study of 30 364 participants aged 18 years or older. We grouped participants as cancer survivors (n = 15 182) and those with no reported history of cancer, whom we refer to as control respondents (n = 15 182), matched on age. We excluded individuals reporting a cancer diagnosis prior to age 18 years and those with nonmelanoma skin cancers. Main Outcomes and Measures: We compared issues with health care access (eg, delayed or forgone care) and affordability (eg, unable to afford medications or health care services) between cancer survivors and control respondents. We also explored trends over time in the proportion of cancer survivors reporting these difficulties. Results: Of the 30 364 participants, 18 356 (57.4%) were women. The mean (SD) age was 63.5 (23.5) years. Cancer survivors were more likely to be insured (14 412 [94.8%] vs 13 978 [92.2%], P < .001) and to have government-sponsored insurance (7266 [44.3%] vs 6513 [38.8%], P < .001) compared with control respondents. In multivariable models, cancer survivors were more likely than control respondents to report delayed care (odds ratio [OR], 1.38; 95% CI, 1.16-1.63), forgone medical care (OR, 1.76; 95% CI, 1.45-2.12), and/or inability to afford medications (OR, 1.77; 95% CI, 1.46-2.14) and health care services (OR, 1.46; 95% CI, 1.27-1.68) (P < .001 for all). From 2010 to 2016, the proportion of survivors reporting delayed medical care decreased each year (B = 0.47; P = .047), and the proportion of those needing and not getting medical care also decreased each year (B = 0.35; P = .04). In addition, the proportion of cancer survivors who reported being unable to afford prescription medication decreased each year (B=0.66; P = .004) and the proportion of those unable to afford at least 1 of 6 services decreased each year (B = 0.51; P = .01). Conclusions and Relevance: Despite higher rates of insurance coverage, cancer survivors reported greater difficulties accessing and affording health care compared with adults without cancer. Importantly, the proportion of survivors reporting these issues continued a downward trend throughout our observation period in the years following the implementation of the Affordable Care Act. Our findings suggest incremental improvement in health care access and affordability after recent health care reform and provide an important benchmark as additional changes are likely to occur in the coming years.

Executive functioning, academic skills, and quality of life in pediatric patients with brain tumors post-proton radiation therapy.

Radiation therapy (RT) is integral in the treatment of pediatric brain tumors; however, photon RT (XRT) often results in intellectual decline, executive functioning (EF) deficits, academic underachievement/failure, and lower health-related quality of life (HRQoL). Proton RT (PRT) provides more targeted therapy, minimizing damage to the developing brain, yet few studies have examined its neuropsychological effects. This study investigated the role of EF in academic skills and HRQoL in a sample of children treated with PRT. A mediation model was proposed in which academic skills mediated relations between aspects of EF and school-based HRQoL (sHRQoL). Sixty-five children (x̅age = 12.4; 43.9% male) treated with PRT completed follow-up neuropsychological testing as part of routine care. Measures included assessment of intellectual functioning, EF, attention, and academic skills (reading, math, spelling). Parents reported on children's EF and attention problems. sHRQoL was assessed via child self-report. Children who underwent PRT demonstrated relatively intact intelligence, academics, attention, EF, and sHRQoL, but were at risk for reduced processing speed. Poorer working memory and processing speed were related to lower sHRQoL. Better EF and faster processing speed were associated with better academic skills, which were linked to higher sHRQoL. Better working memory was associated with better math performance, which was linked to higher sHRQoL; this relationship did not hold for reading or spelling. Results highlight the importance of EF skills in academic performance and sHRQoL, and the need for routine screening of EF deficits and proactive supports. Supports may include cognitive rehabilitation and in-class accommodations. Overall, results compare favorably to XRT outcomes reported in the literature.

"Job Lock" Among Long-term Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study.

Importance: Childhood cancer survivors may be reluctant to make changes in their employment because of access to health insurance. Objective: To examine the prevalence of "job lock" (staying at a job to keep work-related health insurance) in a sample drawn from an established, multi-institutional cohort of full-time employed childhood cancer survivors compared with a random sample of siblings and to explore factors associated with job lock among cancer survivors. Design, Setting, and Participants: Cross-sectional survey of full-time employed adult survivors of childhood cancer and a random sample of siblings derived from a cohort of 25 US pediatric oncology centers. Exposures: Data collection included sociodemographic factors, insurance coverage, chronic medical conditions, and treatment. Main Outcomes and Measures: Self-report of job lock and factors associated with job lock. Results: Among the 522 participants, 394 were cancer survivors (54.5% male) and 128 were siblings (51.5% male). Job lock was reported by 23.2% (95% CI, 18.9%-28.1%) of survivors, compared with 16.9% (95% CI, 11.1%-25.0%) of siblings (P = .16). Job lock was more common among survivors reporting previous health insurance denial (relative risk [RR], 1.60; 95% CI, 1.03-2.52) and problems paying medical bills (RR, 2.43; 95% CI, 1.56-3.80). Among survivors, being female (RR, 1.70; 95% CI, 1.11-2.59; P = .01) and having a severe, disabling, or life-threatening health condition (RR, 1.72; 95% CI, 1.09-2.69; P = .02) were associated with job lock. Conclusions and Relevance: Job lock is common among long-term childhood cancer survivors who are employed full-time. A survivor's decision to remain employed at a job in order to maintain health insurance coverage may affect career trajectory, diminish potential earning power, and ultimately impact quality of life.

Financial Burden in Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study.

Purpose Survivors of childhood cancer may experience financial burden as a result of health care costs, particularly because these patients often require long-term medical care. We sought to evaluate the prevalence of financial burden and identify associations between a higher percentage of income spent on out-of-pocket medical costs (≥ 10% of annual income) and issues related to financial burden (jeopardizing care or changing lifestyle) among survivors of childhood cancer and a sibling comparison group. Methods Between May 2011 and April 2012, we surveyed an age-stratified, random sample of survivors of childhood cancer and a sibling comparison group who were enrolled in the Childhood Cancer Survivor Study. Participants reported their household income, out-of-pocket medical costs, and issues related to financial burden (questions were adapted from national surveys on financial burden). Logistic regression identified associations between participant characteristics, a higher percentage of income spent on out-of-pocket medical costs, and financial burden, adjusting for potential confounders. Results Among 580 survivors of childhood cancer and 173 siblings, survivors of childhood cancer were more likely to have out-of-pocket medical costs ≥ 10% of annual income (10.0% v 2.9%; P < .001). Characteristics of the survivors of childhood cancer that were associated with a higher percentage of income spent on out-of-pocket costs included hospitalization in the past year (odds ratio [OR], 2.3; 95% CI, 1.1 to 4.9) and household income < $50,000 (OR, 5.5; 95% CI, 2.4 to 12.8). Among survivors of childhood cancer, a higher percentage of income spent on out-of-pocket medical costs was significantly associated with problems paying medical bills (OR, 8.9; 95% CI, 4.4 to 18.0); deferring care for a medical problem (OR, 3.0; 95% CI, 1.6 to 5.9); skipping a test, treatment, or follow-up (OR, 2.1; 95% CI, 1.1 to 4.0); and thoughts of filing for bankruptcy (OR, 6.6; 95% CI, 3.0 to 14.3). Conclusion Survivors of childhood cancer are more likely to report spending a higher percentage of their income on out-of-pocket medical costs, which may influence their health-seeking behavior and potentially affect health outcomes. Our findings highlight the need to address financial burden in this population with long-term health care needs.

Analysis of patient outcomes following proton radiation therapy for retinoblastoma.

PURPOSE: Proton radiotherapy (PRT) is used in the treatment of retinoblastoma (RB) and has the potential to minimize exposure of normal tissue to radiation and thus decrease risk of toxicity and second malignancies. However, comprehensive analyses of long-term patient outcomes are not available. METHODS: RB patients treated with PRT at our institution between 1986 and 2012 were invited to return for participation in a study designed to assess long-term outcomes. Enrolled patients underwent comprehensive analysis including oncologic, ophthalmic, endocrine, cephalometric, and quality of life (QOL) assessments. RESULTS: A total of 12 patients were enrolled in this study, and the average length of follow-up among enrolled patients was 12.9 years (range 4.8-22.2 years). All enrolled patients had bilateral disease, and the disease and visual outcomes for enrolled patients were similar to outcomes for all RB patients treated with PRT over the same time period at our institution. Endocrine evaluation revealed no growth abnormalities or hormonal deficiencies across the cohort. Based on MRI and external cephalometry, PRT was associated with less facial hypoplasia than enucleation. Patient and parent-proxy QOL assessments revealed that RB treatment did not appear to severely impact long-term QOL. CONCLUSIONS: In addition to providing an opportunity for long-term disease control and functional eye preservation, PRT does not appear to be associated with unexpected late visual, endocrine, or QOL effects in this cohort.

Health insurance coverage, care accessibility and affordability for adult survivors of childhood cancer: a cross-sectional study of a nationally representative database.

PURPOSE: We describe national patterns of health insurance coverage and care accessibility and affordability in a national sample of adult childhood cancer survivors (CCS) compared to adults without cancer. METHODS: Using data from the 2010-2014 National Health Interview Survey (NHIS), we selected a sample of all CCS age 21 to 65 years old and a 1:3 matched sample of controls without a history of cancer. We examined insurance coverage, care accessibility and affordability in CCS and controls. We tested for differences in the groups in bivariate analyses and multivariable logistic regression models. RESULTS: Of all respondents age 21-65 in the full NHIS sample, 443 (0.35 %) were CCS. Fewer CCS were insured (76.4 %) compared to controls (81.4 %, p = 0.067). Significantly more CCS reported delaying medical care (24.7 vs 13.0 %), needing but not getting medical care in the previous 12 months (20.0 vs 10.0 %), and having trouble paying medical bills (40.3 vs 19.7 %) compared to controls (p < 0.0001 for all). More CCS reported trouble with care affordability in the previous 12 months compared to controls on six categories of care and for a combined measure of affordability (p < 0.0001 for composite of all). Adjusted analyses demonstrated that these differences comparing CCS to controls remained significant. CONCLUSIONS: CCS report problems with health care accessibility and affordability. These analyses support the development of policies to assure that CCS have access to affordable services. IMPLICATIONS FOR CANCER SURVIVORS: Efforts to improve access to high-quality and affordable insurance for CCS may help reduce the gaps in getting medical care and problems with affordability. Health care providers should be aware that such problems exist and should discuss affordability and ability to obtain care with patients.

Early Cognitive Outcomes Following Proton Radiation in Pediatric Patients With Brain and Central Nervous System Tumors.

PURPOSE: To report, from a longitudinal study, cognitive outcome in pediatric patients treated with proton radiation therapy (PRT) for central nervous system (CNS) tumors. METHODS AND MATERIALS: Sixty patients receiving PRT for medulloblastoma (38.3%), gliomas (18.3%), craniopharyngioma (15.0%), ependymoma (11.7%), and other CNS tumors (16.7%) were administered age-appropriate measures of cognitive abilities at or near PRT initiation (baseline) and afterward (follow-up). Patients were aged ≥ 6 years at baseline to ensure consistency in neurocognitive measures. RESULTS: Mean age was 12.3 years at baseline; mean follow-up interval was 2.5 years. Treatment included prior surgical resection (76.7%) and chemotherapy (61.7%). Proton radiation therapy included craniospinal irradiation (46.7%) and partial brain radiation (53.3%). At baseline, mean Wechsler Full Scale IQ was 104.6; means of all 4 Index scores were also in the average range. At follow-up, no significant change was observed in mean Wechsler Full Scale IQ, Verbal Comprehension, Perceptual Reasoning/Organization, or Working Memory. However, Processing Speed scores declined significantly (mean 5.2 points), with a significantly greater decline for subjects aged <12 years at baseline and those with the highest baseline scores. Cognitive outcome was not significantly related to gender, extent of radiation, radiation dose, tumor location, histology, socioeconomic status, chemotherapy, or history of surgical resection. CONCLUSIONS: Early cognitive outcomes after PRT for pediatric CNS tumors are encouraging, compared with published outcomes from photon radiation therapy.

Supplemental security income and social security disability insurance coverage among long-term childhood cancer survivors.

Supplemental security income (SSI) and social security disability insurance (DI) are federal programs that provide disability benefits. We report on SSI/DI enrollment in a random sample of adult, long-term survivors of childhood cancer (n = 698) vs a comparison group without cancer (n = 210) from the Childhood Cancer Survivor Study who completed a health insurance survey. A total of 13.5% and 10.0% of survivors had ever been enrolled on SSI or DI, respectively, compared with 2.6% and 5.4% of the comparison group. Cranial radiation doses of 25 Gy or more were associated with a higher risk of current SSI (relative risk [RR] = 3.93, 95% confidence interval [CI] = 2.05 to 7.56) and DI (RR = 3.65, 95% CI = 1.65 to 8.06) enrollment. Survivors with severe/life-threatening conditions were more often enrolled on SSI (RR = 3.77, 95% CI = 2.04 to 6.96) and DI (RR = 2.73, 95% CI = 1.45 to 5.14) compared with those with mild/moderate or no health conditions. Further research is needed on disability-related financial challenges after childhood cancer.

Childhood Cancer Survivor Study participants' perceptions and understanding of the Affordable Care Act.

PURPOSE: The Patient Protection and Affordable Care Act (ACA) established provisions intended to increase access to affordable health insurance and thus increase access to medical care and long-term surveillance for populations with pre-existing conditions. However, childhood cancer survivors' coverage priorities and familiarity with the ACA are unknown. METHODS: Between May 2011 and April 2012, we surveyed a randomly selected, age-stratified sample of 698 survivors and 210 siblings from the Childhood Cancer Survivor Study. RESULTS: Overall, 89.8% of survivors and 92.1% of siblings were insured. Many features of insurance coverage that survivors considered "very important" are addressed by the ACA, including increased availability of primary care (94.6%), no waiting period before coverage initiation (79.0%), and affordable premiums (88.1%). Survivors were more likely than siblings to deem primary care physician coverage and choice, protections from costs due to pre-existing conditions, and no start-up period as "very important" (P < .05 for all). Only 27.3% of survivors and 26.2% of siblings reported familiarity with the ACA (12.1% of uninsured v 29.0% of insured survivors; odds ratio, 2.86; 95% CI, 1.28 to 6.36). Only 21.3% of survivors and 18.9% of siblings believed the ACA would make it more likely that they would get quality coverage. Survivors' and siblings' concerns about the ACA included increased costs, decreased access to and quality of care, and negative impact on employers and employees. CONCLUSION: Although survivors' coverage preferences match many ACA provisions, survivors, particularly uninsured survivors, were not familiar with the ACA. Education and assistance, perhaps through cancer survivor navigation, are critically needed to ensure that survivors access coverage and benefits.