Childhood Cancer and Functional Impacts Across the Care Continuum (2021) / Chapter Skim
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SSA provides disability benefits through two programs: Social Security Disability Insurance (Title II of the Social Security Act) and Supplemental Security Income (SSI)
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The committee also hosted a panel discussion to hear the perspectives of parents, educators, and social workers on the functional capacity of pediatric patients with cancer and survivors of childhood cancers. Function and Disability The World Health Organization's International Classification of Functioning, Disability and Health (ICF)
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SSA incorporates function into its definition of disability for children, considering children under age 18 to be disabled if they have a "medically determinable physical or mental impairment, which results in marked and severe functional limitations, and which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months."2 SSA looks at "how appropriately, effectively, and independently" children with impairments perform their activities (everything they do at home, at school, and in the community) compared with the performance of other children their age who do not have impairments.3 In particular, SSA considers functioning in six domains: "(1)
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The committee identified three timeframes of interest with respect to childhood cancers and SSA's disability determination processes. The first, which addresses the question of "the minimum period appropriate to consider a childhood cancer disabling," is the period from the child's cancer diagnosis through active treatment and an anticipated period of recovery
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The term "long-term survivor" is preferred as it better communicates the concept that disease-free status comes with significant risk of long-term effects. Selection of Cancer Types The committee was asked to "provide an overview of the current status of the diagnosis, treatment, and prognosis of select childhood cancers, including different types of malignant solid tumors." The committee understood the phrase "malignant solid tumors" to refer specifically to a category within SSA's child cancer listings with the same label, which appears to include all types of malignant solid tumors that are not otherwise specified in the listings.
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hematologic malignancies and histiocytoses, (2) CNS tumors, and (3)
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As a result, a large proportion of survivors of childhood cancer are at significantly increased risk for serious, potentially disabling, and life-threatening acute, chronic, and late adverse effects of cancer and its therapy. Chronic health problems related to cancer treatment are common among survivors, increase in prevalence with the passage of time since diagnosis, and encompass a spectrum of biomedical and psychosocial disorders and associated functional limitations.
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• Although many survivors of childhood cancer experience per sistent adverse physical, cognitive, and psychosocial effects from the cancer and its treatment, CNS tumors and some leukemias place survivors at especially high risk for cognitive deficits, and solid tumors are often associated with physical impairments and medical complications. Adverse Effects of Treatment The multimodal treatment of many cancers, utilizing combinations of surgical interventions, chemotherapy, and radiation therapy, as well as immunotherapies, including chimeric antigen receptor (CAR)
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• 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 cancers have a real and increasing risk of experiencing disabling conditions as a result of chronic and late effects and SMN resulting from the cancer and its treatment.
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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.
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The child cancer listings currently contain a category of "malignant solid tumors," which appears to encompass any malignant solid tumors that are not otherwise specifically called out in the listings. In contrast, the adult cancer listings do not include a "malignant solid tumor" category, instead calling out many of those solid tumors individually (e.g.,
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However, complexities of the transition from pediatric to adult cancer care and follow-up may lead to disengagement in care, which can result in more severe adverse outcomes in adult survivors of childhood cancers. For these reasons, the committee drew the following overall conclusion: 5.
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With increased trial availability and continued study, for example, a decrease in side effects is anticipated from such advances as precision radiation therapy, including proton therapy. Likewise, targeted and immunotherapies offer promise for treating cancers with unmet clinical need, but further studies are necessary to understand how these novel therapies can be incorporated into the treatment of both newly diagnosed patients and patients with relapsed and refractory cancers.
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-- centers in which a surgeon or an interventional radiologist has received specialized training beyond the standard training for that specialty. Similarly, precision radiation therapy, including proton beam, is increasingly used to target the therapy more precisely in order to mitigate the late effects of treatment in children with cancer, especially those with CNS tumors, but it is not available at many radiation treatment centers in the United States.
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