Mental Health Care Utilization Among Parents of Children With Cancer.

Importance: Caring for children diagnosed with cancer may adversely affect the mental health (MH) of parents. Objective: To characterize utilization of MH services among parents of children with vs without cancer using nationwide commercial claims data. Design, Setting, and Participants: For this cross-sectional study, the Merative MarketScan Commercial Claims Database was used to identify continuously insured families of children treated for cancer (aged ≤21 years at diagnosis) during 2010 to 2018, compared with families who matched eligibility criteria but did not have a child with a cancer history. Parents were assessed from 18 months before to 12 months after their child's cancer diagnosis. Analyses were conducted from February 2022 to September 2023. Exposures: Children's cancer diagnosis. Main Outcomes and Measures: Outcomes included parents' MH-related visits during the first year following their child's cancer diagnosis. Logistic regressions compared outcomes between families of children with vs without cancer, adjusting for sociodemographic and clinical factors. Results: This study included 4837 families of children with cancer (4210 mothers and 4016 fathers) and 24 185 families of children without cancer (21 444 mothers and 19 591 fathers) with continuous insurance enrollment. Most household leads were aged 35 to 54 years (3700 [76.5%] in families of children with cancer vs 17 812 [73.6%] in families of children without cancer) and resided in urban areas (4252 [87.9%] vs 21 156 [87.5%]). The probabilities of parents having anxiety-related visits (10.6% vs 7.0%), depression-related visits (8.4% vs 6.1%), and any MH-related visits (18.1% vs 13.3%) were higher in families of children with vs without cancer. Adjusted analyses showed absolute increases of 3.2 percentage points (95% CI, 2.3 to 4.0; 45.7% relative increase), 2.2 percentage points (95% CI, 1.4 to 3.0; 36.1% relative increase), and 4.2 percentage points (95% CI, 3.1 to 5.3; 31.3% relative increase) in the probabilities of 1 or both parents having anxiety-related visits, depression-related visits, and any MH-related visits, respectively, among families of children with vs without cancer. Such differences were greater in magnitude among mothers than fathers. Conclusions and Relevance: In this cohort study of privately insured parents, those caring for children with cancer had a higher likelihood of utilizing MH care than other parents. These findings underline the importance of interventions toward targeted counseling and support to better meet MH care needs among parents and caregivers of children with cancer.

Understanding caregivers' decision to vaccinate childhood cancer survivors against COVID-19.

BACKGROUND: Vaccination against COVID-19 is recommended for childhood cancer survivors (CCS). This study aimed to identify antecedents contributing to caregivers' decisions to vaccinate CCS aged 5-17 years against COVID-19 by applying the Theory of Planned Behavior. METHODS: Participants in this cross-sectional study completed an online survey assessing caregiver attitudes, subjective norms, perceived behavioral control, intention to vaccinate CCS, CCS vaccination status, COVID-19 health literacy, and frequency of COVID-19 information-seeking. Surveys were completed between May and June 2022 following approval for the emergency use of COVID-19 vaccines among children aged ≥5 years in the U.S. Data were analyzed using unadjusted linear regressions and structural equation modeling. RESULTS: Participants were caregivers (n = 160, 87.5% biological mothers, 75.6% white/non-Hispanic) of CCS (n = 160, 44.4% female, mean (M) = 12.5 years old, M = 8.0 years off treatment). 70.0% (n = 112) of caregivers and 53.8% (n = 86) of CCS received a COVID-19 vaccine. Over one-third (37.5%) of caregivers reported disagreement or indecision about future COVID-19 vaccination for the CCS. Caregivers' intention (ß = 0.962; standard error [S.E.] = 0.028; p < 0.001) was highly related to CCS vaccination status. Attitudes (ß = 0.568; S.E. = 0.078; p < 0.001) and subjective norms (ß = 0.322; S.E. = 0.062; p < 0.001) were associated with intention. Higher frequency of COVID-19 information-seeking (ß = 0.313; S.E. = 0.063; p < 0.001) and COVID-19 health literacy (ß = 0.234; S.E. = 0.059; p < 0.001) had a positive indirect effect on intention through attitudes and subjective norms. CONCLUSIONS: Caregivers' vaccination intentions for minor CCS are highly related to vaccination behavior and shaped by attitudes, subjective norms, COVID-19 health literacy, and frequency of COVID-19 information-seeking. Promoting tailored communication with caregivers of CCS and encouraging them to review reputable sources of information can address their vaccine hesitancy.

Children's Oncology Group's 2023 blueprint for research: Behavioral science.

As survival rates for childhood cancer have improved, there has been increasing focus on identifying and addressing adverse impacts of cancer and its treatment on children and their families during treatment and into survivorship. The Behavioral Science Committee (BSC) of the Children's Oncology Group (COG), comprised of psychologists, neuropsychologists, social workers, nurses, physicians, and clinical research associates, aims to improve the lives of children with cancer and their families through research and dissemination of empirically supported knowledge. Key achievements of the BSC include enhanced interprofessional collaboration through integration of liaisons into other key committees within COG, successful measurement of critical neurocognitive outcomes through standardized neurocognitive assessment strategies, contributions to evidence-based guidelines, and optimization of patient-reported outcome measurement. The collection of neurocognitive and behavioral data continues to be an essential function of the BSC, in the context of therapeutic trials that are modifying treatments to maximize event-free survival, minimize adverse outcomes, and optimize quality of life. In addition, through hypothesis-driven research and multidisciplinary collaborations, the BSC will also begin to prioritize initiatives to expand the systematic collection of predictive factors (e.g., social determinants of health) and psychosocial outcomes, with overarching goals of addressing health inequities in cancer care and outcomes, and promoting evidence-based interventions to improve outcomes for all children, adolescents, and young adults with cancer.

Clinic reported facilitators and barriers to pediatric cancer survivor care delivery among survivorship clinics: A fishbone analysis.

BACKGROUND: Childhood cancer survivors need regular, long-term survivor care. The Children's Oncology Group (COG) recommends that pediatric patients receive ongoing, evidence-based surveillance for late effects, beginning 2 years after the completion of cancer therapy. However, at least a third of survivors are not engaging in long-term survivorship care. This study assessed facilitators and barriers to follow-up survivorship care through the perspectives of pediatric cancer survivor 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 facilitators and barriers to survivor care delivery at their institution. Interviews were grounded in the socio-ecological model (SEM) framework and utilized a fishbone diagram to understand what facilitates and impedes survivor care. We ran descriptive statistics and conducted thematic analyses of the interview transcripts to create two meta-fishbone diagrams. RESULTS: All participating clinics (N = 12) have existed for at least 5 years (mean = 15, median = 13, range = 3-31), and half (n = 6, 50%) reported seeing more than 300 survivors annually. In the fishbone diagram, the top facilitators were in the SEM domain of organization, specifically with familiar staff (n = 12, 100%), resource utilization (n = 11, 92%), dedicated survivorship staff (n = 10, 83%), and clinic processes (n = 10, 83%). Common barriers were across the domains of organization, community, and policy, which included distance/transportation to the clinic (n = 12, 100%), technology limits (n = 11, 92%), scheduling issues (n = 11, 92%), and insufficient funding/insurance (n = 11, 92%). CONCLUSION: Clinic staff and provider perceptions are instrumental in understanding multilevel contextual issues related to survivor care delivery for pediatric cancer survivor clinics. Future research can aid in developing education, processes, and services to promote cancer survivor follow-up care.

Transition practices for survivors of childhood cancer: a report from the Children's Oncology Group.

PURPOSE: Pediatric healthcare systems must support childhood cancer survivors to optimize their transition to adult care. This study aimed to assess the state of healthcare transition services provided by Children's Oncology Group (COG) institutions. METHODS: A 190-question online survey was distributed to 209 COG institutions to assess survivor services, including transition practices, barriers, and implementation of services aligned with the six core elements of Health Care Transition 2.0 from the US Center for Health Care Transition Improvement. RESULTS: Representatives from 137 COG sites reported on institutional transition practices. Two-thirds (66.4%) of site discharge survivors to another institution for cancer-related follow-up care in adulthood. Transfer to primary care (33.6%) was a commonly reported model of care for young adult-aged survivors. Site transfer at ≤ 18 years (8.0%), ≤ 21 years (13.1%), ≤ 25 years (7.3%), ≥ 26 years (12.4%), or when survivors are "ready" (25.5%). Few institutions reported offering services aligned with the structured transition process from the six core elements (Median = 1, Mean = 1.56, SD = 1.54, range: 0-5). The most prevalent barriers to transitioning survivors to adult care were perceived lack of late-effects knowledge among clinicians (39.6%) and perceived lack of survivor desire to transfer care (31.9%). CONCLUSIONS: Most COG institutions transfer adult-aged survivors of childhood cancer elsewhere for survivor care, yet few programs report delivering recognized standards for quality healthcare transition programming to support survivors. IMPLICATIONS FOR CANCER SURVIVORS: Development of best practices for survivor transition is needed to help promote increased early detection and treatment of late effects among adult survivors of childhood cancer.

Cancer-Related Barriers to Health Behaviors Among Adolescent and Young Adult Survivors of Pediatric Cancer and Their Families.

Adolescent and young adult (AYA) survivors of pediatric cancer and their caregivers frequently do not meet national guidelines for physical activity (PA), nutrition, or sleep. Respondents from N = 73 AYA-aged (mean [M] = 19.0 years, range = 11-30 years) survivor families completed a survey on cancer-related barriers to health behaviors. Almost all respondents (68/73, 93.2%) endorsed ≥1 cancer-specific barrier(s) to current health behaviors (median = 5, standard deviation = 3.42, range = 0-16) in their family. Cancer-related barriers to PA, nutrition, and sleep were positively correlated (PA-nutrition: r = 0.39, p = 0.001; PA-sleep: r = 0.41, p < 0.001; nutrition-sleep: r = 0.52, p < 0.001). Wellness interventions are needed to address the unique needs of AYA-aged survivors and support multiple health behaviors simultaneously.

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

Survivors of childhood, adolescent, and young adult (diagnosed when <25 years of age) cancer are at risk of mental health problems. The aim of this clinical practice guideline is to harmonise international recommendations for mental health surveillance in survivors of childhood, adolescent, and young adult cancer. This guideline was developed by a multidisciplinary panel of experts under the sponsorship of the International Guideline Harmonization Group. We evaluated concordance among existing survivorship clinical practice guidelines and conducted a systematic review following evidence-based methods. Of 7249 studies identified, 76 articles from 12 countries met the inclusion criteria. Recommendations were formulated on the basis of identified evidence in combination with clinical considerations. This international clinical practice guideline strongly recommends mental health surveillance for all survivors of childhood, adolescent, and young adult cancers at every follow-up visit and prompt referral to mental health specialists when problems are identified. Overall, the recommendations reflect the necessity of mental health surveillance as part of comprehensive survivor-focused health care.

National estimates of mental health service use and unmet needs among adult cancer survivors.

BACKGROUND: Cancer survivors are at elevated risk for developing mental health (MH) disorders. This study assessed MH service use and unmet service needs among a nationally representative sample of cancer survivors. METHODS: Respondents aged 18 to 64 years were identified from the 2015-2018 National Survey of Drug Use and Health data. Outcomes assessed past-year MH service use and self-reported unmet MH needs. Outcomes were compared between respondents who reported a cancer history (survivors) and those who did not (controls), descriptively and in adjusted analyses controlling for sociodemographic factors and health status. Analyses were stratified by age groups (18-34, 35-49, and 50-64 years). RESULTS: Comparing 3540 survivors with 149,843 controls, within each age group, a higher proportion of survivors than controls received any MH service (P values < .05); this difference persisted among those aged 35 to 49 years (P = .004) in fully adjusted models. Moreover, a higher proportion of survivors than controls reported an unmet need for MH care; this difference was larger among young adults aged 18 to 34 years (20.8% vs 9.0%; P < .001) than those aged 35 to 49 years (9.4% vs 5.3%; P < .001) and 50 to 64 years (4.8% vs 3.4%; P = .029). In fully adjusted models, the survivor-control difference in self-reported unmet MH needs persisted among young adults (24% relative increase; P = .023). Among cancer survivors, young adult survivors had the highest likelihood of reporting unmet MH needs. CONCLUSIONS: This nationally representative study found an increased perception of unmet needs for MH care among cancer survivors, particularly among young adult survivors, compared with the general population without cancer.

Evaluation of the Modified Reproductive Concerns Scale Among Emerging Adult Cancer Survivors.

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 analysis was to evaluate a modified version of the Reproductive Concerns Scale (mRCS) among male and female survivors of childhood cancer. Methods: This is a secondary analysis of cross-sectional survey data collected from patients enrolled on an infertility-educational intervention study. Participants completed the mRCS at baseline. Cancer treatment data were abstracted from participant medical records. Principal component analyses were conducted to evaluate the factor structure of the mRCS for males, females, and the entire sample. Internal consistency was evaluated using Cronbach's alpha. Open-ended responses were analyzed and used to assess the validity of relevant quantitative items on the mRCS. Results: The sample consisted of N = 98 participants who were an average of 19.1 (±1.1) years of age, 45.9% were male, and 61.2% were non-Hispanic white. Factor analyses revealed three domains: Fertility Concerns (Cronbach's alpha = 0.77), Health Concerns (α = 0.74), and Information Seeking (α = 0.57). Sex-specific factor analyses identified differences in scale items for males. The open-ended responses aligned well with participant scores on the Fertility Concerns subscale. Conclusion: The mRCS consists of three subscales relevant to emerging adult survivors of childhood cancer. Further analysis by sex suggests that separate scales for males and females are warranted. Future research is warranted to determine the clinical utility of using the mRCS as a screening tool to identify and address reproductive concerns among emerging adult survivors.

Guidance regarding COVID-19 for survivors of childhood, adolescent, and young adult cancer: A statement from the International Late Effects of Childhood Cancer Guideline Harmonization Group.

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

User-centered design and enhancement of an electronic personal health record to support survivors of pediatric cancers.

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

Alcohol consumption behaviors and neurocognitive dysfunction and emotional distress in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

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

Family Functioning and Depressive Symptoms in Adolescent and Young Adult Cancer Survivors and Their Families: A Dyadic Analytic Approach.

Background: To examine dyadic relationships between depressive symptoms and family functioning in families of pediatric cancer survivors. Methods Sixty-four adolescent and young adult (AYA) cancer survivors and their caregivers self-reported on depressive symptoms and family functioning. Multilevel modeling analyses were used to test actor­partner interdependence models. Results: Significant actor effects of depressive symptoms on domains of family functioning were found for AYAs and their caregivers. Only caregivers' depressive symptoms exerted a significant effect on AYAs' report of family cohesion, indicating the presence of significant partner effects for AYAs. Conclusions: AYAs' and caregivers' depressive symptoms are related to poorer family functioning. Caregivers' perceptions of depressive symptoms relate not only to their own perceptions of family functioning but also to that of their children. These findings begin to map the complex relationships that exist between AYAs and their caregivers and elucidate some of the mechanisms through which caregiver-related variables affect AYA outcomes.

Predictors of fatigue and poor sleep in adult survivors of childhood Hodgkin's lymphoma: a report from the Childhood Cancer Survivor Study.

PURPOSE: Survivors of pediatric Hodgkin's lymphoma (HL) are at risk for a number of debilitating late effects. Excessive fatigue and poor sleep quality are primary complaints of HL survivors. Understanding the emotional and physical factors that influence fatigue and sleep quality may provide opportunities for intervention to improve health-related quality of life for HL survivors. METHODS: Data from 751 adult survivors of childhood HL who participated in the Childhood Cancer Survivor Study (CCSS) from 2000-2002 were analyzed. Multivariable logistic regression analyses investigated the demographic, psychological, and physical variables that predicted clinically significant levels of poor sleep quality, fatigue, and excessive daytime sleepiness. RESULTS: Survivors' self-reported level of emotional distress, pain, and physical functioning limitations did not differ from population norms. Clinically elevated levels of emotional distress (OR 8.38, 95% CI 4.28-16.42) and pain (OR 3.73, 95% CI 2.09-6.67) increased the risk for endorsing elevated levels of fatigue. Survivors with elevated levels of emotional distress (OR 6.83, 95% CI 2.71-15.90) and pain (OR 5.27, 95% CI 1.78-15.61) were more likely to report poor sleep quality. Pain (OR 2.11, 95% CI 1.39-3.34) was related to excessive daytime sleepiness. CONCLUSIONS: Emotional and physical factors are associated with elevated levels of fatigue, excessive daytime sleepiness, and poor sleep quality in survivors of pediatric HL. This is consistent with findings from research conducted with non-cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: These results suggest that interventions designed to target sleep and fatigue difficulties in the general population may be well suited for pediatric HL survivors as well.

Pediatric quality of life in long-term survivors of childhood cancer treated with anthracyclines.

BACKGROUND: Anthracyclines are a common class of drugs used to treat pediatric cancer. While much attention is given to their cardiotoxicity, little is known about the relationship between the use of anthracyclines and health-related quality-of-life (HRQoL) outcomes. This study examines the association of anthracycline cardiotoxicity risk status and Pediatric Quality-of-Life (PedsQL) InventoryTM scores in childhood cancer METHODS: Pediatric cancer survivors aged 8-21 who were at least 5 years posttreatment were recruited from a Cancer Survivor Clinic. Participants completed the PedsQL 4.0 Generic Core Scales and a health behavior survey. Linear regression was used to evaluate the association between PedsQL scores and anthracycline cardiotoxicity risk status and to assess whether self-reported physical activity modified the association. RESULTS: Eighty survivors participated and were characterized by cardiotoxicity risk status (high: 12; moderate: 23, low: 24, no risk: 21) as defined by the Children's Oncology Group (COG). Measures in all PedsQL domains tended to be slightly lower for survivors exposed to anthracyclines as compared to the unexposed. The largest difference in unadjusted mean scores was for social functioning (96.0% for unexposed vs. 91.3% for exposed, P = 0.0068). There was also an inverse dose-response relation between adjusted PedsQL scores and increasing anthracycline cardiotoxicity risk; this association was not modified by physical activity level. CONCLUSION: These data indicate that regular psychosocial assessments, such as those currently recommended by the COG, may be especially important for survivors treated with anthracyclines.

Providers' assessment of transition readiness among adolescent and young adult kidney transplant recipients.

The Readiness for Transition Questionnaire- provider version (RTQ-Provider) was developed to evaluate adolescent patients' transition readiness and healthcare behaviors from the perspective of the healthcare provider. The RTQ-Provider is a parallel version of the RTQ-Teen and RTQ-Parent completed by patients and parents. This study seeks to evaluate the psychometric properties of the RTQ-Provider and its utility as a clinical transition planning tool. Participants consisted of 49 kidney transplant recipients between the ages of 15 and 21. The RTQ-Provider was completed by the pediatric nephrologist and psychologist from the multidisciplinary healthcare team and compared to RTQ data from teens and parents. The RTQ-Provider demonstrated good-to-excellent internal consistency and interrater reliability. Construct validity was supported through significant predictive relationships between providers' perceptions of transition readiness and older patient age, increased patient healthcare responsibility, and decreased parent involvement in health care. By providing parallel teen, parent, and provider forms, the RTQ has the potential to foster open communication between patients, families, and healthcare team members regarding transition readiness. The study provides initial support for the RTQ-Provider as a clinical tool to assess providers' perceptions of transition readiness; however, future longitudinal research is needed to evaluate predictive validity following patients' transfer to adult care.