The task order objectives for an ad hoc committee of the National Academies of Sciences, Engineering, and Medicine are to:
1. Provide an overview of the current status of the diagnosis, treatment, and prognosis of select childhood cancers, including different types of malignant solid tumors, in the U.S. population under age 18 and the relative levels of functional limitation typically associated with the cancers, common treatments, and other considerations.
2. For the cancers identified in task 1, describe to the degree possible:
a. The average age of onset and gender distributions;
b. The professionally accepted diagnostic techniques used in identifying childhood cancers (for example, laboratory and clinical findings) and how the techniques differ from those for adults (if appropriate);
c. The stages of childhood cancers, how the stages are determined (for example, by specific laboratory findings), what the stages mean in terms of treatment and prognosis, and how they differ from cancers in adulthood (if appropriate);
d. Clinical standards for identifying "cure" or complete remission, variability in the time period used to identify remission, the difference between complete remission and partial remission (if appropriate), and the consequences of partial remission (for example, if partial remission results in a reduction in type or intensity of treatment);
e. The minimum period appropriate to consider a childhood cancer disabling under SSA’s definition of disability for children;
f. Secondary impairments that result from either the cancer or the treatment (for example, cognitive impairment following certain treatment);
g. Common long-term and late effects of the cancer or therapy;
h. Any variability in the period of time a child’s functioning can be expected to be significantly affected, remission rate, cure, or severity based on age of onset; and
i. Prognosis and survival rate based on the stage and the type of cancer (including area of body affected).
3. For the cancers identified in task 1, identify the types of treatments available and describe to the degree possible:
a. The clinical practice guidelines for receiving the treatments;
b. The settings in which the treatments are provided;
c. What receipt of the treatments indicates about the severity of the medical condition;
d. The likelihood of improvement when receiving the treatments and the period over which the improvement would be expected; and
e. Any limitations on the availability of the treatments (other than due to financial circumstances), such as whether treatments are considered experimental, remain in the trial phase, or are only utilized in certain geographic areas.
4. For the cancers identified in task 1, provide a summary of select treatments currently being studied in clinical trials.
The report will include conclusions but not recommendations.
The committee shall not describe issues with respect to access to treatments due to financial circumstances, including insurance limitations. While SSA recognizes some patients may have difficulty accessing care or particular forms of treatment due to financial circumstances, others do successfully access those treatments. SSA may receive information about those treatments in the medical records SSA considers when making disability determinations and conducting continuing disability reviews (CDRs). SSA understands improvement is not certain in all cases. SSA makes individual decisions on each case based on all the evidence they receive.