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BACKGROUND AND AIMS: Intracranial germ cell tumor (iGCT) survivors have multiple risk factors for growth hormone (GH) deficiency, a commonly reported late effect in childhood cancer survivors. The objective of this study is to examine the prevalence of GH deficiency among childhood iGCT survivors. METHODS: Participants were previously enrolled in the Germ Cell Tumor Epidemiology Study (GaMETES), a case parent triad study conducted using the Children’s Oncology Group registry protocols, including 216 cases with iGCTs. Data on late effects and outcomes are available for 129 iGCT cases who consented for a follow-up study including a self-administered questionnaire and medical record retrieval. GH deficiency was identified via self-report and validated through medical record review. Chi-squared and Fisher’s exact tests were used to examine cases with GH deficiency predating iGCT detection. Logistic regression was used to identify predictors of GH deficiency as a late effect. RESULTS: Of 129 iGCT cases who participated in the late effects study, 45% had GH deficiency; 18% had GH deficiency predating the iGCT and 27% developed GH deficiency within a median of 19 months after diagnosis. Younger age at diagnosis, suprasellar location, and higher radiation doses were associated with GH deficiency as a late effect. CONCLUSIONS: GH deficiency is highly prevalent as an early clinical sign for iGCT and frequently arises as an early late effect after treatment. Additional investigation is needed to address earlier detection and treatment for this highly prevalent late effect in iGCT survivors.

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 sites 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. Sites 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.

Objective. To understand the evidence base for care interventions, implementation strategies, and between-provider communication tools among children with special healthcare needs (CSHCN) transitioning from pediatric to adult medical care services. Data sources. We searched Ovid MEDLINE, Ovid Embase, the Cochrane Central trials (CENTRAL) registry, and CINAHL to identify studies through September 10, 2021. We conducted grey literature searches to identify additional resources relevant to contextual questions. Review methods. Using a mixed-studies review approach, we searched for interventions or implementation strategies for transitioning CSHCN from pediatric to adult services. Two investigators screened abstracts and full-text articles of identified references for eligibility. Eligible studies included randomized controlled trials, quasi-experimental observational studies, and mixed-method studies of CSHCN, their families, caregivers, or healthcare providers. We extracted basic study information from all eligible studies and grouped interventions into categories based on disease conditions. We summarized basic study characteristics for included studies and outcomes for studies assessed as low to medium risk of bias using RoB-2. Results. We identified 9,549 unique references, 440 of which represented empirical research; of these, 154 (16 major disease categories) described or examined a care transition intervention with enough detail to potentially be eligible for inclusion in any of the Key Questions. Of these, 96 studies met comparator criteria to undergo risk of bias assessment; however only 9 studies were assessed as low or medium risk of bias and included in our analytic set. Low-strength evidence shows transition clinics may not improve hemoglobin A1C levels either at 12 or 24 months in youth with type 1 diabetes mellitus compared with youth who received usual care. For all other interventions and outcomes, the evidence was insufficient to draw meaningful conclusions because the uncertainty of evidence was too high. Some approaches to addressing barriers include dedicating time and resources to support transition planning, developing a workforce trained to care for the needs of this population, and creating structured processes and tools to facilitate the transition process. No globally accepted definition for effective transition of care from pediatric to adult services for CSHCN exists; definitions are often drawn from principles for transitions, encompassing a broad set of clinical aspects and other factors that influence care outcomes or promote continuity of care. There is also no single measure or set of measures consistently used to evaluate effectiveness of transitions of care. The literature identifies a limited number of available training and other implementation strategies focused on specific clinical specialties in targeted settings. No eligible studies measured the effectiveness of providing linguistically and culturally competent healthcare for CSHCN. Identified transition care training, and care interventions to