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Cancer survivors with a history of gonadotoxic treatment are at risk for future infertility and reproductive concerns, including worry about infertility. The purpose of this study was to describe factors associated with fertility-related worry among emerging adult survivors of childhood cancer.This chart review included patients aged 18.00-25.99 years and 1 year from cancer treatment completion with a history of gonadotoxic treatment. Survivors were offered structured fertility-focused discussions at age ≥ 18 years, which assessed worry about future infertility. Data from this discussion (i.e., reported fertility-related worry (yes/no), sociodemographic, and clinical characteristics were abstracted from the medical record. Multivariable logistic regression with backwards elimination was used to calculate odds ratios (OR) and 95% confidence intervals (95%CI) for factors associated with fertility-related worry.Survivors (N = 249) were a mean age of 19.1 ± 1.2 years at initial fertility discussion; 55.8% were male, 58.2% non-Hispanic White, and 27.3% were at high risk for future treatment-related infertility. Fertility-related worry was reported by 66.3% of survivors. Factors related to worry on multivariable analysis included female sex (OR: 2.64, 95%CI: 1.44-4.96, p = .002), solid tumor diagnosis (OR: 2.31, 95%CI: 1.15-4.71, p = .019), moderate and high risk of infertility (OR: 2.94, 95%CI: 1.23-7.64, p = .02; OR: 3.25, 95%CI: 1.55-7.17, p = .002), and ≥ 2 fertility discussions during survivorship care OR: 2.71, 95%CI: 1.46-5.20, p = .002).Two-thirds of emerging adult cancer survivors expressed worry about future infertility, which has been linked to a variety of adverse quality of life outcomes. Survivors who are worried about infertility may benefit from psychological interventions.

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.

Purpose: The reproductive concerns of emerging adult survivors of childhood cancer are not well described, and valid measurement tools tailored to this population are lacking. The purpose of this a...

Background: Childhood cancer survivors need regular, long-term survivor care. The Children’s Oncology Group (COG) recommends that pediatric cancer patients receive ongoing, evidence-based surveillance for late-effects beginning two years after cancer therapy completion. A third of survivors are not engaging in long-term survivorship care. This study assessed barriers and facilitators to follow-up survivorship care through the perspectives of pediatric cancer clinic representatives. Methods: As part of a hybrid implementation-effectiveness trial, a representative from 12 participating pediatric cancer survivor clinics completed a survey about site characteristics, and a semi-structured interview on barriers and facilitators to survivor care delivery at their institution. Interviews were grounded in the socio-ecological model (SEM) framework and utilized a Fishbone diagram to identify the root causes of a problem. We ran descriptive statistics and conducted thematic analyses of the interview transcripts to create two meta-Fishbone diagrams. Results: Participating clinics (n=12) have existed for at least five years (mean=30, range= 5-97), and half (50%) report seeing 100-200 survivors annually. In the Fishbone diagram, top facilitators were in the SEM domain of Organization, specifically with familiar staff (100%), resource utilization (92%), survivorship-exclusive staff (83%), and clinic processes (83%). Common barriers were in the domains of Organization, Community, and Policy which included technology limits (92%), scheduling issues (92%), insufficient funding/insurance (92%), and distance/transportation (100%). Conclusion: Using the Fishbone diagram was instrumental in understanding multilevel contextual issues related to survivor care delivery for pediatric cancer clinics. Future efforts can develop education, processes, and services to promote cancer follow-up care.

Cancer survivors who received gonadotoxic treatment are at-risk for future infertility and may desire a fertility status assessment (FSA), defined as semen analysis for males and consultation with a reproductive specialist for females. The purpose of this study was to describe the proportion of, and factors associated with, interest in FSA among young adult survivors of childhood cancer.This retrospective single-institution review included patients with prior gonadotoxic treatment, aged 18-25 years and 1 year from cancer treatment completion, who received a fertility-focused discussion during survivorship. Documentation of interest in and completion of FSA, worry about infertility, sociodemographic, and clinical characteristics were abstracted from medical records. Multivariable logistic regression was performed to calculate odds ratios (OR) and 95% confidence intervals (95%CI) for factors associated with interest in FSA.Survivors (N = 259) were on average 19.2 ± 1.2 years at their fertility discussion; 55.6% were male and 57.9% non-Hispanic white. Interest in FSA was reported by 50.7% of males and 46.1% of females. Factors related to interest in FSA for males and females respectively, included worry about infertility (OR 2.40, 95%CI 1.11-5.27, p = 0.026 and OR 4.37, 95%CI 1.71-12.43, p = 0.003) and ≥2 fertility discussions (OR 3.78, 95%CI 1.70-8.75, p = 0.001 and 2.45, 95%CI 1.08-5.67, p = 0.033). Among males, fertility preservation consult/procedure at diagnosis (OR 3.02, 95%CI 1.09-9.04, p = 0.039) and high-risk for infertility (OR 2.47, 95%CI 1.07-5.87, p = 0.036) were also associated with interest in FSA.Cancer survivors are interested in FSA, particularly those who have had repeated fertility-focused discussions during survivorship care and who report worry about infertility.

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

Allogeneic hematopoietic cell therapy (HCT) is an established cure for sickle cell disease (SCD); however, HCT conditioning regimens are known to be gonadotoxic. Anti-mullerian hormone (AMH) measures ovarian reserve, and follicle-stimulating hormone (FSH) defines premature ovarian insufficiency (POI) at values40 mIU/mL in pubertal females. The present study was conducted to assess ovarian reserve and function before and after transplantation in pediatric and adolescent females with SCD treated with allogeneic HCT between January 2015 and June 2020 at Children's Healthcare of Atlanta. In this retrospective review of 17 females age21 years with SCD who had AMH levels measured at baseline and at 2 years post-HCT, AMH levels were categorized as normal, low, or undetectable, and FSH levels were measured and used to identify pubertal females who had developed POI. Demographic and treatment data were abstracted from the institutional database and medical records, and a descriptive statistical analysis was conducted. Of the 17 patients in the study cohort, 14 had been treated with hydroxyurea and 3 had chronic transfusions but with no significant iron overload. AMH levels were normal in 15 patients (88%) and low in 2 patients (12%) at baseline. The median age at HCT was 7.5 years (range, 3.7 to 20.3 years), and 14 patients (82%) underwent matched related donor HCT. After HCT, 15 patients (88%) had undetectable AMH and 2 (12%) had low AMH, with no apparent differences by HCT conditioning regimen. No pubertal patients had POI at baseline, whereas 55% of pubertal patients had progressed to POI by 2 years post-HCT. In this cohort, the majority of females had normal AMH levels at baseline but undetectable levels after HCT. Females with SCD considering HCT should be counseled about the treatment-related risk of gonadal dysfunction. © 2022 American Society for Transplantation and Cellular Therapy. Published by Elsevier Inc.

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

Childhood cancer survivors need regular, risk-adapted, long-term survivor care. This retrospective study describes the proportion of survivors seen for an initial survivor clinic visit within a large pediatric oncology program. Patients diagnosed with non-central nervous system childhood malignancies from 2007 to 2012 were followed from the time of survivor clinic eligibility (2 years following completion of therapy) through their initial survivor clinic visit or end of study. Demographic, cancer-related, and logistical factors related to clinic attendance were examined using Kaplan-Meier curves and Cox proportional regressions. Eligible survivors were 53.0% male, 51.5% non-Hispanic white, and 30.9% survivors of leukemia. Among the 866 eligible survivors for this study, 610 (70.4%) completed their initial visit. After controlling for sex and time eligible, survivors who received surgery only (aHR 0.04 (0.02, 0.08)) or radiation only (0.24 (0.15, 0.39)) and who had Medicaid (0.77 (0.64, 0.92)) were significantly less likely to have an initial visit as were those of black or other/mixed race and those who lived > 25 mi from the clinic (p

Background Targeted anticancer therapies such as BCR-ABL tyrosine kinase inhibitors (TKIs) have improved outcomes for chronic myeloid leukemia (CML) and Philadelphia chromosome-positive acute lymphoblastic leukemia (Ph + ALL). However, little is known about long-term risks of TKIs in children. Exposure-based survivorship guidelines do not include TKIs, thus surveillance practices may be variable. Methods We retrospectively examined surveillance for cardiac and endocrine late effects in children receiving TKIs for Ph + leukemias, diagnosed at Results 66 patients (CML n = 44; Ph + ALL n = 22) met inclusion criteria. Among patients with CML, ≥1 evaluation was done: ECHO (50.0%), EKG (48.8%), TSH (43.9%), DXA (2.6%), bone age (7.4%). Among patients with Ph + ALL, ≥1 evaluation was done: ECHO (86.4%), EKG (68.2%), TSH (59.1%), DXA (63.6%), bone age (44.4%). Over a median 6.3 and 5.7 years of observation, respectively, 2% of patients with CML and 57% with Ph + ALL attended a survivorship clinic. Conclusions Despite common exposure to TKIs in survivors of Ph + leukemias, patterns of surveillance for late effects differed in CML and Ph + ALL, with the latter receiving more surveillance likely due to concomitant chemotherapy exposures. Targeted therapies such as TKIs are revolutionizing cancer treatment, but surveillance for late effects and referral to survivorship clinics are variable despite the chronicity of exposure. Evidence based guidelines and longer follow-up are needed.

Most survivors of childhood cancer experience subsequent chronic conditions but little is known about concurrent symptoms. This study seeks to identify late effect symptom clusters among young pediatric cancer survivors. Survivors ≥ 18 or parents of survivors

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.

Objectives This study describes the hormone profiles for gonadal late effects after alkylator-based hematopoietic stem cell transplant (HSCT) regimens used for sickle-cell disease (SCD). Methods This is a retrospective chart review of subjects followed in the post-HSCT clinic for sickle-cell disease. Patient demographics, pubertal development, characteristics of pre-HSCT disease severity, treatment before HSCT, conditioning regimens, presence of graft versus host disease and follicle-stimulating hormone, anti-Mullerian hormone (AMH), luteinizing hormone and testosterone were abstracted from the medical record. Results Forty subjects (24 female individuals) with SCD were 9 (±4.3) years old at HSCT and 7.9 years (±5.6) from HSCT. At the time of transplant, 8% of female individuals and no male individuals were pubertal and 58% of female individuals and 38% of male individuals had been treated with hydroxyurea. Post-HSCT, all of the female individuals had diminished ovarian reserve on the basis of low AMH values and 10 of the pubertal female individuals (71%) had premature ovarian insufficiency defined as follicle-stimulating hormone >40 mIU/mL ×2. There was no ovarian recovery and AMH remained very low or undetectable up to 13 years post-HSCT. In male individuals, luteinizing hormone and testosterone levels were normal for age. Conclusions Post-HSCT for SCD, all female individuals had diminished ovarian reserve and most female individuals had POI, whereas male individuals had normal testosterone hormone production.

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 ...

Pediatric brain tumor survivors often experience persistent and clinically significant late-effects following treatment. Critical to understanding morbidity is utilization of patient-reported outcomes (PROs). The current study evaluated PROs of individuals previously diagnosed with a pediatric brain tumor and identified risk factors for less optimal overall health. Participants included 127 youth 10.59±4.81 (M±SD) years old at survey completion and 4.45±3.82 years from diagnosis of a brain tumor (34.6% Pilocytic Astrocytoma, 9.4% Medulloblastoma, 9.4% Ependymoma, 7.9% Craniopharyngioma, 38.6% Other). Outcomes were assessed via Patient-Reported Outcomes Measurement Information System (PROMIS) parent-proxy measures. Overall health was assessed via PROMIS Global Health (i.e., a measure of general, physical, mental, and social health). Univariate and logistic regression analyses examined potential demographic, medical, and psychosocial factors (e.g., age, race, diagnosis, treatment) related to poor global health. Initial descriptive analyses suggested that most youth experienced anxiety symptoms (T-score M±SD=50.71±11.54), depressive symptoms (47.96±10.34), cognitive functioning (46.52±9.10), and fatigue (55.14±10.62) similar to their peers. However, 31.0% of youth experienced impaired global health (T-score

e22527 Background: BCR-ABL tyrosine kinase inhibitors (TKIs) have revolutionized treatment of Philadelphia chromosome positive acute lymphoblastic leukemia (Ph+ALL) and chronic myeloid leukemia (CML). The off-target effects of long-term TKI use in children are poorly understood. We evaluated institutional screening practices for cardiac and endocrine late effects in those who had received TKIs at two large pediatric cancer centers. Methods: This retrospective cohort included patients diagnosed with Ph+ALL (post completion of frontline therapy) or CML at age < 21 years with ≥1 years of follow-up. Patients were censored at stem cell transplant, blast crisis, secondary neoplasm, death, or last contact. Demographics, clinical features, and incidence of screening echocardiogram (ECHO), electrocardiogram (EKG), dual-energy x-ray absorptiometry (DXA), bone age, and thyroid function (TSH) were abstracted. Descriptive statistics and incidence of screening are presented by diagnosis. Results: The cohort (n = 68) was 50% female, 28% non-Hispanic white, 24% non-Hispanic black, 24% Asian, and 19% Hispanic. CML: Patients were diagnosed at 12.9±4.6 years of age and had 6.3 (0.9-15.6) years of TKI exposure and 6.3 (0.9-15.6) years of follow-up. Imatinib was most commonly used (80%) followed by dasatinib (59%); 48% were exposed to > 1 TKI. Excluding tests at diagnosis, 48% had an ECHO and 48% had an EKG during the follow-up period. TSH, DXA and bone age were measured in 50%, 9% and 11% patients, respectively. Ph+ALL: Patients were diagnosed at 10.8±5.1 years of age and had 2.8 (0.6-11.6) years of TKI exposure and 5.7 (2.1-11.8) years of follow-up. Dasatinib was most commonly used (73%) followed by imatinib (64%); 36% were exposed to > 1 TKI. All received anthracyclines and steroids. Excluding tests at diagnosis, 91% had an ECHO and 77% had an EKG. TSH, DXA and bone age were measured in 82%, 68% and 36% patients, respectively. Conclusions: We note inconsistent cardiac and endocrine screening in patients receiving TKIs for CML and Ph+ALL. Evidence-based guidelines for long-term follow-up and structured monitoring for potential off-target effects are needed. A prospective screening study is in progress and may enhance our understanding of the prevalence of late effects of TKIs. [Table: see text]