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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2021. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington, DC: The National Academies Press. doi: 10.17226/25944.
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1

Introduction

The U.S. Social Security Administration (SSA) provides disability benefits through two programs: Social Security Disability Insurance (SSDI) (Title II of the Social Security Act) and Supplemental Security Income (SSI) (Title XVI of the Social Security Act). The SSDI program, established in 1956, provides benefits to eligible adults with disabilities who have paid into the Disability Insurance Trust Fund, as well as to their spouses and adult children who are unable to work because of severe long-term disabilities. Enacted in 1972, SSI is a means-tested program based on income and financial assets that provides income assistance from U.S. Department of the Treasury general funds to adults aged 65 and older, individuals who are blind, and adults and children with disabilities. As of December 2019, SSDI had approximately 9.2 million beneficiaries and SSI had about 8.1 million recipients who were classified as blind or disabled (SSA, 2020a,b). Every month, approximately 1.5 percent of the approximately 74 million children under age 18 living in the United States, or 1.1 million children, receive SSI benefits (SSA, 2020b; U.S. Census Bureau, 2018). In fiscal year 2019, 2,725 childhood cancer claims were allowed under the SSI program (SSA, 2019). A child who applies for SSI is considered “disabled” if the child has a medically determinable physical or mental impairment or combination of impairments that results in “marked and severe functional limitations” (SSA, 2020c).

CONTEXT FOR THIS STUDY

In evaluating a child’s disability claim based on a physical or mental impairment, SSA follows a three-step disability determination process.

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2021. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington, DC: The National Academies Press. doi: 10.17226/25944.
×

At Step 1, SSA determines whether the applicant is engaging in “substantial gainful activity.”1 If not, then at Step 2, SSA requires sufficient evidence to (1) establish the presence of a medically determinable physical or mental impairment(s), (2) assess the degree of functional limitation the impairment(s) imposes, and (3) project the probable duration of the impairment(s). If SSA establishes the presence of a severe medically determinable physical or mental impairment(s), it determines at Step 3 whether the impairment(s) meets, medically equals (is equivalent in severity to), or functionally equals (i.e., the impairment[s] results in functional limitations equivalent in severity to) the criteria in SSA’s Listing of Impairments (listings) (SSA, 2020c,d). The listings describe, for each of the major body systems, impairments that SSA considers to be severe enough to cause marked and severe functional limitations in children.

SSA organizes the medical criteria in the listings by age (adult [18 years of age and older] or child [less than 18 years of age]) and by body systems. Cancer can affect various body systems, and because of the complexity of cancer disorders, SSA has assigned cancer to its own body system—Cancer (Malignant Neoplastic Diseases) (SSA, 2020e). Accordingly, regardless of where a cancer originates in the body (e.g., in the respiratory or endocrine system), SSA evaluates it under the medical criteria for the cancer body system. When evaluating impairments under the cancer listings,2 SSA considers factors that include

  • origin of the cancer,
  • extent of involvement,
  • duration and frequency of and response to therapy, and
  • effects of any posttherapeutic residuals (SSA, 2020e).

The cancer body system is unique among body systems in that the listings specify a duration for which the impairment(s) due to a cancer is considered disabling. For certain cancer listings, SSA will consider an impairment disabling for a particular period of time (e.g., at least 12 months from the date of a bone marrow transplant). For cancers without such a specified duration, SSA will also consider an impairment that meets or medically equals a cancer listing disabling until at least 3 years after the onset of complete remission. Following the relevant period, SSA will consider any residual functional impact from the cancer or the therapy

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1 “Substantial gainful activity” is work activity involving significant physical or mental activities for pay or profit (20 CFR 416.972). Someone earning more than a specified monthly amount ($1,260 after deduction of impairment-related work expenses for a non-blind individual in 2020) ordinarily is considered to be engaging in substantial gainful activity (SSA, 2020f).

2 The listings for childhood cancer were last updated in July 2015.

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2021. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington, DC: The National Academies Press. doi: 10.17226/25944.
×

in determining whether the child will continue to be considered disabled under the SSI program rules. When a child turns age 18, SSA reviews the individual’s eligibility to continue receiving SSI benefits based on the SSA disability determination process for adults.

STUDY CHARGE AND SCOPE

In 2019, SSA requested that the Health and Medicine Division of the National Academies of Sciences, Engineering, and Medicine convene a committee of relevant experts to conduct a focused review of the medical literature to identify and investigate updated information on medical and technological advances, treatments, and prognoses involving childhood cancers3 (see Box 1-1 for the committee’s Statement of Task). The 16-member committee included experts in pediatric oncology, hematology/oncology, radiation oncology, pediatric surgery, physical medicine and rehabilitation (physiatry), nursing and allied health, neurology, neuropsychology, survivorship, cancer research, and epidemiology (see Appendix D for biographical sketches of the committee members).

SSA asked the Committee on Childhood Cancers and Disability to address several specific topics in carrying out this task, including the latest standards of care; technology for understanding the disease processes involved; relevant treatment modalities; and science demonstrating the effect of selected childhood cancers, including different types of malignant solid tumors, on children’s health and functional capacity.

STUDY APPROACH

Definition of Disability

The concept of disability has evolved over the past several decades from a medical to a biopsychosocial model. In the medical model, disability is viewed as a feature of a person that is caused by injury, disease, or other health conditions and managed through medical treatment or modification of an individual’s behavior (WHO, 2001, 2002; see also IOM, 1991; Kaplan, 2000). In contrast, the biopsychosocial model, exemplified by the World Health Organization’s International Classification of Functioning, Disability and Health (ICF), portrays disability as “the interaction between an individual (with a health condition) and that individual’s contextual factors (environmental and personal factors)” (WHO, 2001). The ICF model

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3 For the purposes of this report, the term “childhood” refers to the age range of 0–18 years. The terms “child” and “children” are used to describe individuals of ages in that range. In text referring to specific populations (e.g., adolescents), precise language is used.

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2021. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington, DC: The National Academies Press. doi: 10.17226/25944.
×

recognizes functioning in three domains (middle tier of Figure 1-1): (1) body functions and structures, which encompasses physiological functions of the body, including psychological functions, as well as the functioning of body structures (e.g., movement of limbs, cardiac function); (2) activities, which are actions or tasks (e.g., running, problem solving); and (3) participation, which is the performance of tasks in a societal context (e.g., participation in school or organized sports). The ICF model refers to deficits in body function and structure as impairments, deficits in completing activities as limitations, and reductions in participation as restrictions. It should be noted that such accommodations as assistive technologies and environmental modifications are environmental contextual factors that act on the ICF domains to enhance an individual’s activity and participation.

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2021. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington, DC: The National Academies Press. doi: 10.17226/25944.
×

SSA incorporates function into its definition of disability for children, considering children under 18 to be disabled if they have a “medically determinable physical or mental impairment that causes 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.”4 SSA considers a wide variety of factors when evaluating the effects of an impairment or combination of impairments on a child’s functioning.5 These factors include but are not limited to

___________________

4 42 U.S.C. 1382(c).

5 20 CFR 416.924a.

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2021. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington, DC: The National Academies Press. doi: 10.17226/25944.
×
Image
FIGURE 1-1 International Classification of Functioning, Disability and Health model of functioning and disability.
SOURCE: WHO, 2001, p. 18.
  • how well the child can initiate and sustain activities, how much extra help he or she needs, and the effects of structured or supportive settings (see § 416.924a(b)(5));
  • how the child functions in school (see § 416.924a(b)(7)); and
  • the effects of the child’s medications or other treatment (see § 416.924a(b)(9)).6

SSA looks at “how appropriately, effectively, and independently the child performs their activities (everything they do at home, at school, and in the community) compared to the performance of other children their age who do not have impairments.” In particular, SSA considers functioning in six domains:

  • acquiring and using information,
  • attending and completing tasks,
  • interacting and relating with others,
  • moving about and manipulating objects,
  • caring for oneself, and
  • health and physical well-being.7

___________________

6 See 20 CFR 416.926a.

7 20 CFR 416.926a.

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2021. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington, DC: The National Academies Press. doi: 10.17226/25944.
×

For a child’s impairment(s) to “functionally equal” the listings, the impairment(s) “must result in ‘marked’ limitations in two domains of functioning or an ‘extreme’ limitation in one domain.”8

Timeframes of Interest

The committee recognized that high-quality cancer care spans the continuum of cancer care from diagnosis through end-of-life care. This report focuses on the acute and chronic phases of this continuum. The acute phase occurs immediately after a person has been diagnosed with cancer and generally includes such up-front treatments as surgery and initial chemotherapy and radiation therapies, as well as palliative and psychosocial care as needed by the patient. The chronic phase, which may continue for months to years following initial diagnosis, encompasses ongoing management of the patient with the goal of providing long-term surveillance for cancer recurrence and, in some patients, prolonged adjuvant or maintenance therapies. In addition, patients may receive palliative and psychosocial care to manage residual effects of the cancer and its treatment (IOM, 2013a).

The committee was asked to describe “the minimum period appropriate to consider a childhood cancer disabling under SSA’s definition of disability for children.” In considering this question, the committee noted important differences between disability in children and in adults. Any interruptions to a child’s normal developmental process and experiences can have profound, and potentially lasting, functional effects. Although severe impairments acquired in adulthood also may seriously affect the individual’s function and participation in work and other daily activities, they do not interfere with the normal acquisition of cognitive and social skills that occurs during childhood and adolescence. Thus, a child’s absences from school (and other typical activities) have greater long-term impacts relative to adults’ absences from work; for children, limited functioning relative to peers has a compounding effect.

The committee identified three timeframes of interest with respect to childhood cancers. 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 from the acute effects of treatment. During the recovery period, the child remains unlikely to be able to participate in school or other activities. The second timeframe is the period following treatment and recovery from any acute effects of treatment, during which the child may continue to experience chronic (ongoing, persistent) effects of treatment and/or develop secondary late effects while still under the age

___________________

8 20 CFR 416.926a.

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2021. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington, DC: The National Academies Press. doi: 10.17226/25944.
×

of 18, the age at which SSA’s disability determination process shifts to that used for adults. The third timeframe is the period of adulthood (more than 18 years of age), during which individuals may continue to experience chronic effects or develop late effects of the treatment for their childhood cancer. The committee identified the period of transition from adolescence to young adulthood as particularly important for this study because of the unique issues it presents with respect to cancer treatment, functional impacts, and disability adjudication.

The committee was also asked to describe “clinical standards for identifying ‘cure’ or complete remission.” Cure is a complicated concept, and although it can be achieved in some patients, use of the term is inconsistent among researchers and clinicians. 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 (Haupt et al., 2007; Jankovic et al., 2018).

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. The committee’s selection of cancers for discussion in this report includes not only cancer types that would be captured within SSA’s “malignant solid tumor” category but also other types of solid tumors, including those of the central nervous system (CNS), and hematologic cancers that are specified in the cancer listings.

One of the challenges the committee faced was use of the traditional classification of tumors as “benign” and “malignant.” The distinction between these categories of tumors is often problematic in children, particularly as regards CNS tumors. Not only are these terms misleading with respect to societal understanding and misconceptions, but many “benign” tumors often cause long-standing and permanent late effects, morbidities, and disability, and many can lead to a child’s death. For these reasons, the committee prefers that these terms be avoided. In CNS tumors, the terms “low grade” and “high grade” are often used instead. Many low-grade lesions, such as a low-grade glioma, are treated in the same manner as a high-grade tumor—with surgery, chemotherapy, and/or radiation. The committee therefore chose to include in this report some lesions that historically have been labeled “benign.” Specifically, the committee included certain lesions that often behave and are treated in the same ways as high-grade

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2021. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington, DC: The National Academies Press. doi: 10.17226/25944.
×

lesions and typically are not considered “benign” by the pediatric oncology community at large.

Selection of Emerging Treatments

The committee was asked to “provide a summary of select treatments currently being studied in clinical trials.” A number of new treatments and emerging therapies are discussed in this report. Rapidly increasing knowledge of the molecular and genomic bases of cancers has resulted in the development of targeted therapies, also referred to as precision therapies, in which new drugs specifically block the effects of tumor-specific changes, such as tumor mutations. Some of these approaches have been highly successful and have been incorporated into standard therapy for children with newly diagnosed or relapsed cancers. In addition, the development of immunotherapy approaches for pediatric cancers is expanding rapidly. A range of immunotherapy approaches are in development for a variety of tumors. Although less advanced than new agents targeting genomic changes, some immunotherapies have already resulted in effective therapies for children with solid tumors or hematologic malignancies.

Information Gathering

The committee identified a number of established, comprehensive sources of information about childhood cancers that are actively maintained through ongoing literature review. These sources include the National Cancer Institute’s (NCI’s) Physician Data Query® (PDQ); Children’s Oncology Group (COG) guidelines; and the Surveillance, Epidemiology, and End Results (SEER) Program.

The PDQ provides “comprehensive, evidence-based summaries on topics that cover adult and pediatric cancer treatment; supportive and palliative care; screening; prevention; genetics; and integrative, alternative, and complementary therapies” (NCI, 2020). The pediatric PDQ summaries are reviewed multiple times per year and updated as needed based on ongoing review of newly published literature, and include information about the strength of the evidence supporting each summary.

Treatment for many pediatric patients in the United States is based on the COG’s multidisciplinary treatment protocols. The COG is an international clinical trials group dedicated to childhood and adolescent cancer research. Its clinical trials include front-line treatment for various childhood cancers; studies to determine their underlying biology; and trials involving new and emerging treatments, supportive care, and survivorship. The COG is supported by NCI and involves thousands of childhood cancer experts at more than 200 leading children’s hospitals, universities,

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2021. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington, DC: The National Academies Press. doi: 10.17226/25944.
×

and cancer centers. See Appendix C for additional information about the PDQ and the COG.

NCI’s SEER Program represents the primary source for population-based data on cancer incidence and survival in the United States. SEER, supported by the Surveillance Research Program at NCI, collects and publishes data from cancer registries throughout the United States.

The committee used these sources where possible, supplemented by its own additional literature reviews as needed. Further information about these resources, and others, is located in Appendix C.

The committee used a variety of resources to supplement these sources. Meeting in person five times, the committee held three public workshops to hear from invited experts in areas pertinent to its charge (see Appendix A). Speakers at these workshops included experts in psychosocial functioning, neurocognitive functioning, physical functioning, and pain in children during and following cancer treatment. The committee also participated in a panel discussion on functioning in patients and survivors of pediatric cancer, hearing parent, educator, and social worker perspectives.

The committee’s work was further informed by previous reports of the National Academies. These reports included Childhood Cancer Survivorship: Improving Care and Quality of Life (IOM and NRC, 2003), Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis (IOM, 2013a), Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer: Workshop Summary (IOM, 2013b), Psychological Testing in the Service of Disability Determination (IOM, 2015), Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society (NASEM, 2015), The Promise of Assistive Technology to Enhance Activity and Work Participation (NASEM, 2017), Opportunities for Improving Programs and Services for Children with Disabilities (NASEM, 2018), Functional Assessment for Adults with Disabilities (NASEM, 2019), and Selected Health Conditions and Likelihood of Improvement with Treatment (NASEM, 2020).

REPORT ORGANIZATION

Chapter 2 provides an overview of the epidemiology of childhood cancers. Chapter 3 describes various treatment modalities for childhood cancers and their sequelae and presents an overview of selected emerging treatments. Chapter 4 looks at the impact of childhood cancers on function. Chapters 5, 6, and 7, respectively, describe the diagnoses, prognoses, and treatments of selected hematologic malignancies, CNS tumors, and non-CNS solid tumors. In these three chapters, specific information is provided for selected cancers through summary paragraphs and tables. Within each

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2021. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington, DC: The National Academies Press. doi: 10.17226/25944.
×

chapter, issues unique to the various cancer types are described in text. Each of these chapters includes two annex tables: one containing diagnostic and prognostic information and one describing treatments, including estimated timeframes for treatment and recovery based on treatment protocols and committee members’ clinical experience and expertise. Chapter 8 describes considerations unique to adolescent patients and survivors of cancer and the transition of that population from adolescence (<18 years) to young adulthood (≥18 years). Finally, Chapter 9 presents the committee’s overall conclusions.

REFERENCES

Haupt, R., J. J. Spinetta, I. Ban, R. D. Barr, J. D. Beck, J. Byrne, G. Calaminus, E. Coenen, M. Chelser, G. J. D’Angio, C. Eiser, A. Feldges, F. Gibson, H. Lackner, G. Masera, L. Massimo, E. Magyarosy, J. Otten, G. Reaman, M. G. Valsecchi, A. J. P. Veerman, A. Penn, A. Thorvildsen, C. van den Bos, M. Jankovic, and I-BFM-SG ELTEC. 2007. Long term survivors of childhood cancer: Cure and care: The Erice Statement. European Journal of Cancer 43(12):1778–1780.

IOM (Institute of Medicine). 1991. Disability in America: Toward a national agenda for prevention. Washington, DC: National Academy Press.

IOM. 2013a. Delivering high-quality cancer care: Charting a new course for a system in crisis. Washington, DC: The National Academies Press.

IOM. 2013b. Identifying and addressing the needs of adolescents and young adults with cancer: Workshop summary. Washington, DC: The National Academies Press.

IOM. 2015. Psychological testing in the service of disability determination. Washington, DC: The National Academies Press.

IOM and NRC (National Research Council). 2003. Childhood cancer survivorship: Improving care and quality of life. Washington, DC: The National Academies Press.

Jankovic, M., R. Haupt, J. J. Spinetta, J. D. Beck, J. Byrne, G. Calaminus, H. Lackner, A. Biondi, K. Oeffinger, M. Hudson, R. Skinner, G. Reaman, H. van der Pal, L. Kremer, J. den Hartogh, G. Michel, E. Frey, E. Bardi, M. Hawkins, K. Rizvi, M. Terenziani, M. G. Valsecchi, G. Bode, M. Jenney, F. de Vathaire, S. Garwicz, G. A. Levitt, D. Grabow, C. E. Kuehni, M. Schrappe, L. Hjorth, and participants in PanCare. 2018. Long-term survivors of childhood cancer: Cure and care—the Erice Statement (2006) revised after 10 years (2016). Journal of Cancer Survivorship 12(5):647–650.

Kaplan, D. 2000. The definition of disability: Perspective of the disability community. Journal of Health Care Law and Policy 3(2):352–364.

NASEM (National Academies of Sciences, Engineering, and Medicine). 2015. Comprehensive cancer care for children and their families: Summary of a joint workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press.

NASEM. 2017. The promise of assistive technology to enhance activity and work participation. Washington, DC: The National Academies Press.

NASEM. 2018. Opportunities for improving programs and services for children with disabilities. Washington, DC: The National Academies Press.

NASEM. 2019. Functional assessment for adults with disabilities. Washington, DC: The National Academies Press.

NASEM. 2020. Selected health conditions and likelihood of improvement with treatment. Washington, DC: The National Academies Press.

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2021. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington, DC: The National Academies Press. doi: 10.17226/25944.
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NCI (National Cancer Institute). 2020. PDQ cancer information summaries. Bethesda, MD: National Cancer Institute. Updated May 4, 2020. https://www.cancer.gov/publications/pdq/information-summaries (accessed June 24, 2020).

SSA (U.S. Social Security Administration). 2019 (unpublished). SSA childhood cancer claims data: FY19 child summary. Baltimore, MD: SSA.

SSA. 2020a. Annual statistical supplement, 2020—OASDI current-pay benefits: Summary (5.A). https://www.ssa.gov/policy/docs/statcomps/supplement/2020/5a.pdf (accessed September 9, 2020).

SSA. 2020b. Annual statistical supplement, 2020—SSI summary (7.A). https://www.ssa.gov/policy/docs/statcomps/supplement/2020/7a.pdf (accessed September 9, 2020).

SSA. 2020c. Disability evaluation under social security. https://www.ssa.gov/disability/professionals/bluebook/general-info.htm (accessed March 20, 2020).

SSA. 2020d. Listing of Impairments—Childhood Listings (Part B). https://www.ssa.gov/disability/professionals/bluebook/ChildhoodListings.htm (accessed January 13, 2020).

SSA. 2020e. Listing of Impairments—113.00 Cancer-Childhood. https://www.ssa.gov/disability/professionals/bluebook/113.00-NeoplasticDiseases-Malignant-Childhood.htm (accessed May 21, 2020).

SSA. 2020f. Substantial gainful activity. https://www.ssa.gov/OACT/COLA/sga.html (accessed September 15, 2020).

U.S. Census Bureau. 2018. Current population reports: Number of children (in millions) ages 0–17 in the United States by age, 1950–2018 and projected 2019–2050. https://www.childstats.gov/americaschildren/tables/pop1.asp (accessed January 10, 2020).

WHO (World Health Organization). 2001. International classification of functioning, disability and health. Geneva, Switzerland: WHO.

WHO. 2002. Towards a common language for functioning, disability and health: ICF. Geneva, Switzerland: WHO.

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2021. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington, DC: The National Academies Press. doi: 10.17226/25944.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2021. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington, DC: The National Academies Press. doi: 10.17226/25944.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2021. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington, DC: The National Academies Press. doi: 10.17226/25944.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2021. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington, DC: The National Academies Press. doi: 10.17226/25944.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2021. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington, DC: The National Academies Press. doi: 10.17226/25944.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2021. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington, DC: The National Academies Press. doi: 10.17226/25944.
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Since the late 1960s, the survival rate in children and adolescents diagnosed with cancer has steadily improved, with a corresponding decline in the cancer-specific death rate. Although the improvements in survival are encouraging, they have come at the cost of acute, chronic, and late adverse effects precipitated by the toxicities associated with the individual or combined use of different types of treatment (e.g., surgery, radiation, chemotherapy). In some cases, the impairments resulting from cancer and its treatment are severe enough to qualify a child for U.S. Social Security Administration disability benefits.

At the request of Social Security Administration, Childhood Cancer and Functional Impacts Across the Care Continuum provides current information and findings and conclusions regarding the diagnosis, treatment, and prognosis of selected childhood cancers, including different types of malignant solid tumors, and the effect of those cancers on children’s health and functional capacity, including the relative levels of functional limitation typically associated with the cancers and their treatment. This report also provides a summary of selected treatments currently being studied in clinical trials and identifies any limitations on the availability of these treatments, such as whether treatments are available only in certain geographic areas.

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