Changes in Medicaid Enrollment Among Adult Survivors of Childhood Cancer After Medicaid Expansion: A Report From the Childhood Cancer Survivor Study.

The incidence of childhood, adolescent, and young adult (AYA) cancers have been increasing since 1975.[1][1] In 2014, an estimated 10 450 and 5330 new cancers will be diagnosed among children aged birth–14 and adolescents aged 15 to 19 years old, respectively.[2][2] For young adults aged 20 to 34

10011 Background: Little is known about whether Medicaid expansion under the Affordable Care Act (ACA) affected insurance coverage among adult survivors of childhood cancer, a population at high-risk for poor health outcome. We addressed this gap by evaluating the association between ACA Medicaid expansion and Medicaid enrollment among participants in the Childhood Cancer Survivor Study (CCSS). Methods: The CCSS cohort of 5-year survivors of childhood cancer was linked to administrative Medicaid insurance data in 2010-2016. We identified 13,895 adult survivors (aged 18-64 years) diagnosed with cancer under age 21 and between 1970 and 1999. Outcomes included (1) percentage with any Medicaid enrollment by year; and (2) Medicaid-covered days (number of days when a survivor was enrolled in Medicaid) during each year. Multivariable difference-in-differences (DD) models were used to examine outcome changes pre vs. post ACA Medicaid expansion, in expansion- vs. non-expansion states, adjusting for age, sex, race/ethnicity, income, education, and chronic conditions. Multivariable models were conducted overall and then stratified by cancer type, race/ethnicity, income, and education. Results: Medicaid enrollment rates increased more in expansion states (17.6% pre-expansion to 24.1% post-expansion) than non-expansion states (16.4% to 16.9%), leading to a net increase in enrollment of 6.6 percentage points (ppt; 95% CI = 5.5-7.7) in the multivariable DD model. Multivariable DD model showed a net increase of 18.4 days (95% CI = 13.8-23.1) in Medicaid-covered days in expansion states relative to non-expansion states. The expansion-associated increase in Medicaid enrollment rates was greatest among survivors of leukemia (multivariable DD estimate: 8.9 ppt, 95% CI = 6.9-11.0) and non-Hodgkin lymphoma (8.0 ppt, 95% CI = 5.0-10.9). Greater increases in Medicaid enrollment were seen in non-Hispanic Black (13.5 ppt, 95% CI = 8.0-19.1) and Hispanic survivors (15.8 ppt, 95% CI = 10.6-21.0) than non-Hispanic White peers (5.1 ppt; 95% CI = 4.0-6.2); in survivors with < $20K household income (11.7 ppt, 95% CI = 8.9-14.4) compared to those with ≥$60K household income (2.9 ppt, 95% CI = 1.6-4.2); and in survivors with high school or lower education (9.3 ppt, 95% CI = 6.9-11.8) compared to those with a college or higher degree (3.9 ppt, 95% CI = 2.6-5.3). Similar patterns were observed across survivor subgroups when examining Medicaid-covered days. Conclusions: We provide the first evidence on increased Medicaid enrollment and longer coverage duration among adult survivors of childhood cancer following Medicaid expansion, with greater increases seen among survivors of underrepresented racial/ethnic populations, those with low socioeconomic status, and high medical need survivors.

258 Background: One in three childhood cancer survivors are enrolled in Medicaid at diagnosis, a population requiring lifelong health insurance to support long-term outcomes. However, knowledge gaps remain regarding modifiable factors to Medicaid coverage for adolescent/young adult (AYA) or adult survivors of childhood cancer. We explored healthcare provider and staff perspectives on barriers and facilitators to continuous Medicaid coverage for this high-need population. Methods: We conducted semi-structured interviews with 22 stakeholders—including oncologists, nurses, social workers (SW), and financial counselors (FC)—who directly care for AYA/adult survivors of childhood cancer. Interviews (~45 minutes) were audio-recorded, transcribed, coded using both deductive and inductive approaches, and compared across practice type. Results: Participants represented 11 cancer centers in Medicaid expansion (55%) and non-expansion (45%) states. Most were female (91%), aged 40–54 (50%), and non-Hispanic White (73%). Practice types included oncologists/nurses (54%) and SW/FC (46%). Five key barriers to continuous coverage emerged. First, many oncologists and nurses reported a lack of familiarity with Medicaid-related issues and often relied on SW/FC for information. Next, participants described administrative barriers related to burdensome application and renewal processes, including complex documentation and frequent verifications. Third, administrative barriers are particularly challenging for survivors due to unclear disability criteria, post-treatment changes in disability status, and cognitive limitations that impair survivors’ ability to navigate the system. Fourth, many survivors experience missed renewal deadlines, often due to residential transiency or failure to respond to renewal notifications. Finally, the loss of coverage after age 19 in non-expansion states was a major barrier to continuous coverage. Facilitators of continuous coverage included guidance from knowledgeable staff (e.g., SW, dedicated institutional Medicaid teams) and support from family/caregivers and advocacy organizations. To improve continuous coverage, stakeholders proposed simplifying Medicaid processes, expanding eligibility for young adult survivors, increasing Medicaid navigation resources, and educating survivors early—particularly before transitioning from pediatric care. Some participants recommended universal Medicaid coverage for childhood cancer survivors. Conclusions: Healthcare providers and staff identified multilayered barriers to Medicaid coverage for adult survivors of childhood cancer. Our findings underscore the need for reforms to Medicaid access, enhanced survivor and provider education, and greater investment in financial navigation to ensure equitable, seamless coverage for this underserved population.

Late Mortality in Childhood Cancer: Time to Count Our Chips

Fertility Preservation for Pediatric Patients: Current State and Future Possibilities

Childhood cancer survivors are at risk for long-term morbidity and early mortality. Since most adult and some adolescent survivors of childhood cancer will receive their long-term care from a primary care physician, we sought to determine family physicians' comfort with caring for this population. A survey was mailed to 2,520 United States (US) and Canadian family physicians to assess their attitudes and knowledge regarding the care of adolescent and young adult survivors of childhood cancer. One thousand one hundred twenty-four family physicians responded (704 US, 420 Canadian). Median age was 53years; 63% were men; 81% had cared for ≤2 childhood cancer survivors in the past 5years. Of those who had cared for a survivor, 48% had never or almost never received a treatment summary from the referring cancer center; 85% preferred to care for survivors in consultation with a cancer center-based physician or long-term follow-up program. Only 33, 27, and 23% of respondents were very comfortable caring for survivors of childhood Hodgkin lymphoma, acute lymphoblastic leukemia or osteosarcoma, respectively. Only 16, 10, and 74% of respondents correctly identified the guideline recommended surveillance for secondary breast cancer, cardiac dysfunction and hypothyroidism in response to a vignette describing a Hodgkin lymphoma survivor. Respondents rated access to clinical care guidelines and receipt of a patient-specific letter from specialists with surveillance recommendations as the modalities most likely to assist them in caring for survivors. Most family physicians are willing to care for childhood cancer survivors in consultation with a cancer center, and with specific tools to facilitate this care. Adult and adolescent survivors of childhood cancer who receive their follow-up care from a family physician must be empowered to choose a physician who is comfortable with caring for survivors. Further, the survivor must ensure that their physician has access to a treatment summary as well as to patient-specific recommendations for surveillance for late effects of cancer therapy.

Adult survivors of childhood cancer are at risk for medical and psychosocial sequelae that may adversely affect their health status. To compare the health status of adult survivors of childhood cancer and siblings and to identify factors associated with adverse outcomes. Health status was assessed in 9535 adult participants of the Childhood Cancer Survivor Study, a cohort of long-term survivors of childhood cancer who were diagnosed between 1970 and 1986. A randomly selected cohort of the survivors' siblings (n = 2916) served as a comparison group. Six health status domains were assessed: general health, mental health, functional status, activity limitations, cancer-related pain, and cancer-related anxiety/fears. The first 4 domains were assessed in the control group. Survivors were significantly more likely to report adverse general health (odds ratio [OR], 2.5; 95% confidence interval [CI], 2.1-3.0; P<.001), mental health (OR, 1.8; 95% CI, 1.6-2.1; P<.001), activity limitations (OR, 2.7; 95% CI, 2.3-3.3; P<.001), and functional impairment (OR, 5.2; 95% CI, 4.1-6.6; P<.001), compared with siblings. Forty-four percent of survivors reported at least 1 adversely affected health status domain. Sociodemographic factors associated with reporting at least 1 adverse health status domain included being female (OR, 1.4; 95% CI, 1.3-1.6; P<.001), lower level of educational attainment (OR, 2.0; 95% CI, 1.8-2.2; P<.001), and annual income less than 20 000 dollars (OR, 1.8; 95% CI, 1.6-2.1; P<.001). Relative to those survivors with childhood leukemia, an increased risk was observed for at least 1 adverse health status domain among those with bone tumors (OR, 2.1; 95% CI, 1.8-2.5; P<.001), central nervous system tumors (OR, 1.7; 95% CI, 1.5-2.0; P<.001), and sarcomas (OR, 1.2; 95% CI, 1.1-1.5; P =.01). Clinicians caring for adult survivors of childhood cancer should be aware of the substantial risk for adverse health status, especially among females, those with low educational attainment, and those with low household incomes.

10051 Background: Chronic health conditions are prevalent among adult survivors of childhood cancer. The impact of health on maintaining full-time (FT) employment, a common indicator of socioeconomic independence, has not been studied in this population. Methods: Self-reported employment status (FT, part-time [PT], unemployed [any reason], not in labor force) was assessed at two timepoints (2002-04 [T1] and 2015-16 [T2]) in adult (≥25y old) survivors of childhood cancer diagnosed between 1970-86. Sex-stratified Poisson regression, adjusted for race and ages at diagnosis and T2, was used to study associations between timing and severity of chronic health conditions (graded per the CTCAE v4.03) and transitions from FT to PT or unemployed. Results: Survivors employed FT at T1 (males=1712, median age [min-max]: 34y [25-53]; females=1337, 33y [25-53]) who reported employment status at T2 were included. At T2 (median time from T1 11.5y [9.4-13.8]), 83% males and 70% females remained employed FT, but 4% and 10% transitioned to PT, and 11% and 12% to unemployed (additional 2% and 8% left the labor force), respectively. Male and female survivors with grade 2 or 3-4 neurologic conditions acquired before T1 or between T1-T2 were at a higher risk of moving from FT to PT or unemployed compared to those with grade 0-1 conditions. Males and females with grade 3-4 respiratory conditions prior to T1 and cardiac and musculoskeletal conditions acquired between T1-T2 were also at higher risk for moving to PT or unemployed (Table). Additional predictors for males included grade 2 vision (before T1 RR 2.3, 95% CI 1.5-3.3; between T1-T2 RR 1.7, 95% CI 1.1-2.7) and endocrine (before T1 RR 1.4, 95% CI 1.1-1.9; between T1-T2 RR 1.7, 95% CI 1.3-2.3) conditions. Conclusions: A substantial portion of adult survivors of childhood cancer with health conditions of varying severity leave FT employment. Increased awareness of all stakeholders may facilitate access to clinical counseling and occupational provisions for flexible and supportive work accommodations to reduce work-related barriers for childhood cancer survivors. [Table: see text]

BACKGROUND The objective of the current study was to describe a multidisciplinary transition program for following young adult survivors of childhood cancer in an adult-based ambulatory medical setting and to report the late effects with grades of toxicity diagnosed in all adult survivors followed in the program. METHODS The study population was comprised of all young adult survivors (n = 96) of childhood cancer who were seen in the After the Cancer Experience (ACE) Young Adult Program prior to January 31, 1999. The median age of the survivors was 22.8 years (range, 17–34 years) and the median interval from the time of cancer diagnosis was 15.2 years (range, 6–25 years). Primary cancer groups included: leukemia, 33%; sarcoma, 24%; Hodgkin disease, 15%; non-Hodgkin lymphoma, 12%; Wilms' tumor, 9%; and other, 7%. Late effects were graded using the Common Toxicity Criteria, Version 2 (CTCv2), developed by the National Cancer Institute. RESULTS Approximately 69% of the patients (66 of 96) had at least 1 late effect. Thirty-three percent of patients had a single late effect whereas 36% had ≥ 2 late effects. Thirty percent of patients had a CTCv2 Grade 3 or 4 late effect. CONCLUSIONS The current study represents an example of a successful multidisciplinary transition program in an ambulatory, adult setting for young adult survivors of childhood cancer. Late effects of cancer treatment are common in young adult survivors, with approximately 33% being moderate to severe. Further studies are needed to modify CTCv2 with the aim of developing a reliable and valid tool to assess late effects in long term survivors of childhood cancer. Cancer 2000;88:1687–1695. © 2000 American Cancer Society.

The objective of the current study was to describe a multidisciplinary transition program for following young adult survivors of childhood cancer in an adult-based ambulatory medical setting and to report the late effects with grades of toxicity diagnosed in all adult survivors followed in the program. The study population was comprised of all young adult survivors (n = 96) of childhood cancer who were seen in the After the Cancer Experience (ACE) Young Adult Program prior to January 31, 1999. The median age of the survivors was 22.8 years (range, 17-34 years) and the median interval from the time of cancer diagnosis was 15.2 years (range, 6-25 years). Primary cancer groups included: leukemia, 33%; sarcoma, 24%; Hodgkin disease, 15%; non-Hodgkin lymphoma, 12%; Wilms' tumor, 9%; and other, 7%. Late effects were graded using the Common Toxicity Criteria, Version 2 (CTCv2), developed by the National Cancer Institute. Approximately 69% of the patients (66 of 96) had at least 1 late effect. Thirty-three percent of patients had a single late effect whereas 36% had >/= 2 late effects. Thirty percent of patients had a CTCv2 Grade 3 or 4 late effect. The current study represents an example of a successful multidisciplinary transition program in an ambulatory, adult setting for young adult survivors of childhood cancer. Late effects of cancer treatment are common in young adult survivors, with approximately 33% being moderate to severe. Further studies are needed to modify CTCv2 with the aim of developing a reliable and valid tool to assess late effects in long term survivors of childhood cancer.

Childhood cancer survivors may be at risk for impaired psychosexual functioning as a direct result of their cancer or its treatments, psychosocial difficulties, and/or diminished quality of life. Two thousand one hundred seventy-eight female adult survivors of childhood cancer and 408 female siblings from the Childhood Cancer Survivor Study (CCSS) completed a self-report questionnaire about their psychosexual functioning and quality of life. On average, participants were age 29 years (range, 18 to 51 years) at the time of the survey, had been diagnosed with cancer at a median age of 8.5 years (range, 0 to 20) and were most commonly diagnosed with leukemia (33.2%) and Hodgkin lymphoma (15.4%). Multivariable analyses suggested that after controlling for sociodemographic differences, survivors reported significantly lower sexual functioning (mean difference [MnD], -0.2; P = .01), lower sexual interest (MnD, -0.2; P < .01), lower sexual desire (MnD, -0.3; P < .01), lower sexual arousal (MnD, -0.3; P < .01), lower sexual satisfaction (MnD, -0.2; P = .01), and lower sexual activity (MnD, -0.1; P = .02) compared with siblings. Risk factors for poorer psychosexual functioning among survivors included older age at assessment, ovarian failure at a younger age, treatment with cranial radiation, and cancer diagnosis during adolescence. Decreased sexual functioning among female survivors of childhood cancers seems to be unrelated to emotional factors and is likely to be an underaddressed issue. Several risk factors among survivors have been identified that assist in defining high-risk subgroups who may benefit from targeted screening and interventions.

Components of the metabolic syndrome in 500 adult long-term survivors of childhood cancer

Cumulative alkylating agent exposure and semen parameters in adult survivors of childhood cancer: a report from the St Jude Lifetime Cohort Study

Long-term survivors of childhood cancer may be at elevated risk for new neurocognitive impairment and decline as they age into adulthood. To determine whether aging adult childhood cancer survivors report more new-onset neurocognitive impairments compared with their siblings and to identify risk factors associated with such impairments. Participants of this cohort study included adult survivors of childhood cancer from the Childhood Cancer Survivor Study and their siblings as a control group. The original cohort included survivors who received a diagnosis between January 1, 1970, and December 31, 1986, for whom longitudinal neurocognitive assessment was available. This study examined the prevalence of new-onset neurocognitive impairment between baseline (23.4 years after diagnosis) and follow-up (35.0 years after diagnosis). The analysis was performed from January 2021 to May 2022. Cancer treatment exposures were abstracted from medical records. Chronic health conditions were graded using Common Terminology Criteria for Adverse Events version 4.03. The primary outcome was new-onset (present at follow-up, but not present at baseline) neurocognitive impairment (defined as a score in the worst 10% of the sibling cohort). Impairment was assessed using the Childhood Cancer Survivor Study Neurocognitive questionnaire. Relative risks (RRs) and 95% CIs were used to estimate associations of neurocognitive impairment with treatment and health behaviors and conditions using generalized linear models. The cohort comprised 2375 survivors (mean [SD] age at evaluation, 31.8 [7.5] years; 1298 women [54.6%]) of childhood cancer, including acute lymphoblastic leukemia (ALL; 1316 participants), central nervous system (CNS) tumors (488 participants), and Hodgkin lymphoma (HL; 571 participants). A total of 232 siblings (mean [SD] age at evaluation, 34.2 [8.4] years; 134 women [57.8%]) were included. Compared with siblings, a higher proportion of survivors with no impairment in memory at baseline had new-onset memory impairment at follow-up: siblings proportion, 7.8% (95% CI, 4.3%-11.4%); ALL survivors treated with chemotherapy only, 14.0% (95% CI, 10.7%-17.4%); ALL survivors treated with cranial radiation (CRT), 25.8% (95% CI, 22.6%-29.0%); CNS tumor survivors, 34.7% (95% CI, 30.0%-39.5%); and HL survivors, 16.6% (95% CI, 13.4%-19.8%). New-onset memory impairment was associated with CRT in CNS tumor survivors (RR, 1.97; 95% CI, 1.33-2.90) and alkylator chemotherapy greater than or equal to 8000 mg/m2 in ALL survivors treated without CRT (RR, 2.80; 95% CI, 1.28-6.12). Neurologic conditions mediated the impact of CRT on new-onset memory impairment in CNS survivors. Smoking, low educational attainment, and low physical activity were associated with elevated risk for new-onset memory impairment. These findings suggest that adult survivors of childhood cancer are at elevated risk for late-onset memory impairment related to modifiable risk factors identified early in survivorship.

Are genetic polymorphisms, previously identified as being associated with age at menopause in the healthy population, associated with ovarian reserve and predicted age at menopause in adult long-term survivors of childhood cancer? The CT genotype of rs1172822 in the BRSK1 gene is associated with lower serum anti-Müllerian hormone (AMH) levels and a younger predicted age at menopause in adult survivors of childhood cancer. Gonadotoxicity is a well-known late side effect of chemotherapy and radiotherapy in adult survivors of childhood cancer. In the healthy population, several genetic polymorphisms are associated with age at natural menopause. Currently, data on the impact of previously identified variants in gene loci associated with ovarian reserve in adult long-term survivors of childhood cancer are lacking. We performed a pilot study in a single-centre cohort of adult female Caucasian childhood cancer survivors (n = 176). We determined serum AMH levels (a marker of ovarian reserve) in adult survivors of childhood cancer (n = 176) and studied single nucleotide polymorphisms (SNPs) previously reported to be associated with age at natural menopause: BRSK1 (rs1172822), ARHGEF7 (rs7333181), MCM8 (rs236114), PCSK1 (rs271924), IGF2R (rs9457827) and TNF (rs909253). Association analysis was performed using the additive genetic model. Linear regression was conducted to assess the effect of significant polymorphisms in two previously published menopause prediction models. The CT genotype of rs1172822 in the BRSK1 (BR serine/threonine kinase 1) gene was negatively associated with serum AMH levels in our cohort (odds ratio: 3.15, 95% confidence interval: 1.35-7.32, P = 0.008) and significantly associated with the predicted age at menopause (P = 0.04). The other five SNPs were not associated with serum AMH levels. This is a pilot study showing preliminary data which must be confirmed. To confirm our findings and enlarge the project, a nationwide genome-wide association (GWA) project on the ovarian reserve in female survivors of childhood cancer should be performed, including a replication cohort. Our findings support the hypothesis that previously identified genetic polymorphisms associated with age at menopause in healthy women may have an effect on the onset of menopause in female survivors of childhood cancer. Our study highlights a new aspect of the influences on the ovarian reserve after childhood cancer, which should be investigated further in a nationwide GWA study. Eventually, this information can help us to improve counselling on fertility preservation prior to cancer treatment based on genetic factors in individual patients. W.D. is supported by the Paediatric Oncology Centre Society for Research (KOCR), Rotterdam, The Netherlands. J.S.E.L. has received fees and grant support from the following companies (in alphabetic order): Ferring, Genovum, Merck-Serono, Organon, Schering Plough and Serono. All other authors have nothing to disclose.