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9 Overall Conclusions
Pages 411-434

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From page 411...
... OVERALL CONCLUSIONS Functional Impacts of Cancer and Its Treatment Cancers occurring under the age of 18 years represent a highly heterogeneous group of malignancies with unique biologic and genetic features, as well as age-, sex- and race-specific incidence rates. The past four decades have seen a modest yet continuous increase in the incidence of cancers occurring under the age of 15 years both in the United States and internationally.
From page 412...
... Long-term functional deficits come from a combination of the permanent destructive effects of the cancer itself and the detrimental effects of its treatment, and long-term follow-up of survivors of childhood cancer has yielded greater recognition and understanding of these chronic and late effects. Age at treatment contributes in a unique way to the risk and severity of long-term adverse effects experienced by survivors of childhood cancer.
From page 413...
... It is likely that overall functional impairment and disability result from not only one but often multiple exposures to different treatments that can have a variety of adverse physical, functional, cognitive, and psychosocial effects. For this reason, it is important for survivors of childhood cancer to receive lifelong surveillance and appropriate interventions for treatment-related physical, cognitive, psychological, and emotional toxicities and late effects.
From page 414...
... In addition, anxiety, depression, and posttraumatic stress occur in a significant subset of survivors, and all survivors are at risk for experiencing the effects of cancer and its treatment on psychosocial and emotional functioning. Psychological late effects also may develop well after the completion of treatment.
From page 415...
... • Increasing understanding of the biology and pathogenesis of cancers is resulting in a growing number of targeted treatments that hold promise for less serious acute and long-term adverse effects. Occurrence and Persistence of Functional Impairments Adult survivors of pediatric cancer have a real and increasing risk of experiencing disabling conditions due to chronic and late effects and SMN resulting from the cancer and its treatment.
From page 416...
... may begin well after treatment has concluded or may become evident at a later developmental stage associated with differing functional demands. • Long-term psychosocial effects are especially common among the following subgroups of children: those who undergo pre treatment prior to hematopoietic stem cell transplantation, those with CNS tumors, and those who experience significant physical late effects.
From page 417...
... . Adolescents who are being reconsidered for SSA disability benefits when turning age 18 must navigate the transition between the child determination process that incorporates functional equivalence to peers and the adult process that focuses on medical–vocational evaluations.
From page 418...
... It is notable that the cognitive effects of cancer treatment not only often persist but also may progress in severity over time. As a result, survivors of childhood cancer require regular, ongoing, lifelong surveillance for physical, cognitive, psychological, and emotional treatment-related toxicities and late effects, some of which may not yet be recognized.
From page 419...
... Studies to understand late effects of novel therapies and intervention studies to mitigate late effects and SMN in hematologic malignancies are imperative because although cure rates are high in many cases, the burden of toxicities and late effects is significant. For these reasons, the committee drew the following overall conclusion: 6.
From page 420...
... -- centers in which an interventional radiologist or surgeon has received specialized training beyond the standard training for that specialty. Similarly, precision radiotherapy techniques, including proton beam radiation, are increasingly available and used to mitigate late effects in patients with childhood cancer.
From page 421...
...  During recent decades, the incidence of childhood cancers has in creased at a modest rate, and the survival rates for many cancer types have improved. The result has been a growing number of survivors of childhood cancer who, starting from the time of diag nosis, are adversely affected by cumulative physical, cognitive, and psychosocial functional deficits, whose severity may increase over time, as a result of the cancer and its treatment.
From page 422...
... 2-10 Chronic and late effects of cancer treatment clearly predispose survivors to greater and more severe morbidity and premature mortality compared with age- and sex-matched controls. 3-1 Treatment of childhood cancers generally includes the indi vidual or combined use of different modalities (e.g., surgery, radiation, chemotherapy)
From page 423...
... 2-2 Adult survivors of childhood cancers have a real and increasing risk of experiencing disabling conditions as a result of chronic and late effects of the cancer and its treatment. 6-2  general, the lower the World Health Organization grade as In signed to a CNS tumor, the better the prognosis.
From page 424...
... 4-8  Given the multimodal treatment of many cancers, involving com binations of surgical intervention, chemotherapy, and radiation therapy, as well as immunotherapies and hematopoietic stem cell transplantation, children with cancer diagnoses will likely be at risk for multiple treatment-related complications and late effects. Thus, it is likely that overall functional impairment and disability result from not just one but often multiple exposures to different treatments that can lead to complications and late effects.
From page 425...
... 6-5 The treatment strategies for pediatric CNS tumors vary depend ing on the tumor type and its location, whether the tumor is newly diagnosed or recurrent, the tumor's grade and molecular features, and specific patient characteristics (such as age)
From page 426...
... 4-4 Survivors of childhood cancer require lifelong surveillance and appropriate interventions for physical, cognitive, psy chological, and emotional treatment-related toxicities and late effects. 6-6 The morbidity associated with pediatric CNS tumors, in cluding acute, chronic, and late effects, is contingent on the tumor type; the tumor location; the patient's age; and associated treatments, including surgery, chemotherapy, and radiation.
From page 427...
... 4-7 Rehabilitation strategies can improve a child's level of in dependence and interaction with skills and activities, but persistent measurable deficits remain for the majority of neurologic and musculoskeletal late effects. 4-9  demands for independence increase over time for the As survivor of childhood cancer, deficits in adaptive function ing are likely to become more profound and noticeable across the survivor's lifetime.
From page 428...
... Conclusions 2-2 Adult survivors of childhood cancers have a real and increasing risk of experiencing disabling conditions as a result of chronic and late effects of the cancer and its treatment. 4-3 Functional deficits resulting from the complications and late effects of childhood cancer and its treatment can be persistent issues that affect survivors and their families.
From page 429...
... disability benefits upon turning age 18 must navigate the transition between the child deter mination process that incorporates functional equivalence to peers and the adult process that focuses on medical–vocational evaluations. 8-3  Complexities in the transition from pediatric to adult cancer care and follow-up may lead to patients' disengagement in care, which in turn can result in more severe adverse outcomes in adult survivors of childhood cancers.
From page 430...
... 6.  Clinical trials advance the standard of care for patients with childhood cancers and are critical to improving survival while also reducing toxicity, late effects, and subsequent neoplasms.
From page 431...
... 3-9  Further studies are required to understand how novel targeted and immunotherapies can be incorporated into the treatment of newly diagnosed patients and how they can be used to address unmet clinical needs. 5-1 Clinical trials are needed to improve or maintain survival in chil dren with hematologic malignancies while limiting acute toxicity and mitigating late effects of treatment, including SMN.
From page 432...
... 7-4 Because advances in pediatric cancer are made incrementally through clinical trials in which the control arm or backbone rep resents the standard of care, participation in trials is considered the standard of care for patients newly diagnosed with non-CNS solid tumors. 7-5 Further evaluation of tumor biology and genomics will likely result in future modifications of risk stratification and aid in identifying additional therapeutic targets and treatment options for pediatric non-CNS solid tumors.
From page 433...
... 8-4 Attrition at the point of transfer from pediatric to adult cancer care cannot be explained solely by issues of access. 8-9 Current guidelines recommend annual assessments to detect late effects, subsequent cancers, and emotional distress in these young survivors, as well as periodic neuropsychological assessments.


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