Hematopoietic cell transplantation (HCT) is an important curative treatment for children with high-risk hematologic malignancies and solid tumors, and increasingly, non-malignant diseases. Given improvements in care, there is a growing number of long-term survivors of pediatric HCT. Compared with non-transplanted childhood cancer survivors, HCT survivors have been shown to have a substantially increased burden of serious chronic conditions and impairments involving virtually every organ system and overall quality of life. This likely reflects the joint contributions of pre-transplant treatment exposures and organ dysfunction, the transplant conditioning regimen, and any post-transplant graft versus host disease (GVHD). In response, the Children’s Oncology Group (COG) has created Long-Term Follow-Up Guidelines (www.survivorshipguidelines.org) for survivors of childhood, adolescent, and young adult cancer, including those treated with HCT. Guidelines taskforces, consisting of HCT specialists, other pediatric oncologists, radiation oncologists, organ-specific subspecialists, nurses, social workers, other healthcare professionals, and patient advocates have systematically reviewed the literature with regards to late effects after childhood cancer and HCT since 2002, with the most recent review completed in 2013. For the most recent review cycle, over 800 articles from the medical literature relevant to childhood cancer and HCT survivorship were reviewed, including 586 original research articles. Provided here-in is an organ system-based overview that emphasizes the most relevant COG recommendations (with accompanying evidence grade) for the long-term follow-up care of childhood HCT survivors (regardless of current age) based on a rigorous review of the available evidence. These recommendations cover both autologous and allogeneic HCT survivors, those transplanted for non-malignant diseases, and those with a history of chronic GVHD.

There are many essential components to end-of-treatment care that are not consistently provided to pediatric cancer patients and families. Formalized programs offering education and support should be provided by multidisciplinary teams prior to the end of active treatment.

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Previous research in childhood cancer and hematopoietic cell transplant (HCT) survivorship has relied on the use of standardized questionnaires that assess symptoms of psychological functioning but do not sufficiently capture the cancer survivorship experience. Study aims are to quantitatively and qualitatively assess the psychosocial functioning of pediatric cancer and HCT survivors seen in a multidisciplinary survivorship clinic, determine survivorship concerns, and assess potential demographic and medical correlates of psychosocial outcomes. Data were collected using a retrospective chart review of a parent-report questionnaire of the child's psychological functioning, responses to a semistructured interview that qualitatively assessed adjustment to life after treatment, and documented medical late effects. Results indicated the majority of survivors had healthy psychological adjustment based upon a parent-report questionnaire. However, nearly 72% of survivors reported 1 or more survivorship concerns during the interview, with the primary concerns being current and future health or physical functioning, including the possibility of cancer recurrence. A content analysis of the interview responses indicated HCT survivors had more school or cognitive functioning concerns compared with survivors who did not have an HCT. Further research should use survivorship-specific measures to better identify survivors at risk and determine the impact of late effects on their quality of life.

Survivorship education and anticipatory guidance represents an unmet need for pediatric, adolescent, and young adult (AYA) cancer survivors and their caregivers when treatment ends. This pilot study evaluated the feasibility, acceptability, and preliminary e cacy of a structured transition program, bridging treatment to survivorship, to reduce distress and anxiety and increase perceived preparedness for survivors and caregivers. MethodsBridge to Next Steps is a 2-visit program, within 8 weeks of treatment completion and 7 months posttreatment, which provides survivorship education, psychosocial screening, and resources. Fifty survivors and 46 caregivers participated. Participants completed pre-and post-intervention measures: Distress Thermometer and PROMIS anxiety/emotional distress (ages ≥ 8 years), and perceived preparedness survey (ages ≥ 14 years). AYA survivors and caregivers completed a post-intervention acceptability survey. ResultsMost participants (92.59%) completed both visits, and most AYA survivors (57.1%) and caregivers (76.5%) endorsed the program as helpful. Caregivers' distress and anxiety scores decreased from pre-to post-intervention (p < 0.01). Survivors' scores remained the same, which were low at baseline. Participants felt more prepared for survivorship from pre-to post-intervention (p = 0.02, p < 0.01, respectively). ConclusionsBridge to Next Steps was feasible and acceptable for most participants. AYA survivors and caregivers felt more prepared for survivorship care after participation. Caregivers reported decreased anxiety and distress from pre-to post-Bridge, whereas survivors remained at a low level for both. Implications for Cancer Survivors:Effective transition programs that better prepare and support pediatric and AYA cancer survivors and families from active treatment to survivorship care will contribute to healthy adjustment.Recognizing the need to ll the knowledge and support gaps during the transition from treatment to survivorship, this will be one of the few known studies to comprehensively evaluate a structured 2-visit transition program, Bridge to Next Steps, which was designed based upon input from survivors, caregivers, and multidisciplinary pediatric oncology providers [6] and takes an innovative processoriented approach. Speci cally, this pilot study aimed to evaluate the acceptability and preliminary e cacy of a structured program, bridging active treatment to survivorship care, to reduce distress and anxiety and increase feelings of preparedness for pediatric and AYA cancer survivors and caregivers. It was hypothesized that a structured transition intervention would be feasible and acceptable and would be associated with reduced distress and anxiety and increased feeling of preparedness for transition for pediatric and AYA cancer survivors and their caregivers. MethodsStructured 2-Visit Transition Program Intervention. Patient and caregiver feedback from a previously completed study [6] was used to inform the development of a new structured transition program to bette...

Children who have undergone bone marrow transplantation (BMT) often have decreased growth. Growth is a multifactorial process, and the factors that influence growth after BMT are not completely understood. The authors hypothesized that donor type may be a factor influencing growth. Sixty-five children and adolescents who underwent BMT (32 related matched, 33 unrelated matched) were evaluated. Growth velocity (height standard deviation) was assessed prior to and 2 years following BMT. The results indicated that children and adolescents who underwent unrelated matched transplants had lower growth velocity (P < .059) than those with related matched transplants. Those who received the standard conditioning regimen that included total body irradiation (TBI) had a significantly lower growth velocity (P< .045) than those with chemotherapy-only regimens. Significant correlates of growth velocity included younger age at BMT and pre-BMT growth velocity. Thus, donor type, age at BMT, prior treatment, and BMT conditioning regimens that include TBI may all affect growth post-BMT. Careful monitoring of growth velocity is required for patients who have received an unrelated donor BMT.

We report a case of a pediatric patient who required three separate transplants: OLT at the age 5, HCT at age 13 (8 years post‐OLT), and cadaveric RT at age 15 (10 years post‐OLT). The child initially presented with fulminant liver failure without known cause, ultimately undergoing OLT from his mother. He then developed SAA, for which he required HCT. Unfortunately, he developed ESRD secondary to prolonged CNI exposure, for which he underwent cadaveric RT. These processes then resulted in 7 years largely free from complications, during which a multi‐disciplinary team monitored the patient for complications. Regrettably, at the age of 21 he developed poorly differentiated mucinous adenocarcinoma of the colon which ultimately led to his demise. While there are case reports of patients requiring two sequential transplants, there is a paucity of reports of successfully completing three separate organ transplants in the same patient. Our case demonstrates progression of a pediatric patient through OLT, HCT, and RT with discussion of notable clinical implications. Secondarily, this case highlights the importance of coordination of care amongst various subspecialties to facilitate tandem transplantations and manage the complications of these processes. As pediatric patients have improved survival rates and may require multiple transplants, it remains important to highlight the feasibility as well as the complications of the tandem transplant process.

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