An ad hoc committee of the National Academies of Sciences, Engineering, and Medicine will review selected conditions that result from being born at a low birth weight and produce a report addressing the current status of the diagnosis, treatment, and prognosis of related disabilities based on published evidence (to the extent possible) and professional judgement (where evidence is lacking):
1. Provide an overview of the current status of the treatment and prognosis of low birth weight babies, including current trends in survivability, in the U.S. population under age 1, including common treatments, short and long term functional outcomes of low birth weight, and other considerations.
2. For low birth weight babies, describe to the degree possible:
a. The professionally accepted standards to define premature babies;
b. Clinical standards for determining gestational age (for example, last menstrual period);
c. Current survivability rates based on weight at birth;
d. Any changes in survivability rates over the past 20 years;
e. Any advances in treatments related to improved survivability rates over the past 20 years;
f. Trends in the occurrence of low birth weight babies with long-term issues;
g. The progression of the development for low birth weight babies and the age ranges normally looked at for this development;
h. The age range in which differences in health and development exist between low birth weight babies and babies born at normal weights, including clinical standards for calculating and considering the “corrected chronological age” when evaluating possible developmental delays in children who were born prematurely;
i. Any points in time where it can be determined if an issue will be permanent or can improve;
j. Any variability in the period of time a child’s functioning can be expected to improve;
k. Any differences in health outcomes (short or long term) based on birth sex, race, ethnicity, geographic location, or socioeconomic factors; and
l. Any differences in health outcomes between children who receive SSA disability payments on the basis of low birth weight and those who would have qualified for SSA disability payments on the basis of low birth weight but never applied for or received those benefits.
3. For low birth weight babies, provide a summary of the most common conditions related to low birth weight:
a. Secondary impairments that result from low birth weight both during the first year after birth and those that develop at later ages;
b. Describe whether these are acute or chronic conditions;
c. Prognosis and expected rate of long-term conditions related to low birth weight;
d. Which conditions are predictive of long-term complications of low birth weight, and what those complications can be; and
e. Any differences in prevalence or severity of common conditions related to low birth weight based on birth sex, race, ethnicity, geographic location, or socioeconomic factors.
4. For low birth weight babies, identify the types of services or treatment available and describe to the degree possible:
a. The clinical practice guidelines for receiving the services or treatment;
b. The settings in which the services or treatments are provided;
c. What the effects are of not receiving services, including the likelihood of the development of conditions secondary to low birth weight;
d. Any limitations on the availability of the services or treatments; and
e. Any differences in health outcomes following the receipt of such services or treatments on the basis of birth sex, race, ethnicity, geographic location, or socioeconomic factors.
The report will include findings and conclusions but not recommendations.