TABLE 2.
DATA ELEMENTS TO BE COLLECTED IN MAT-LINK
Category | Variables |
---|---|
Maternal health history | • Demographic information • Social determinants of health (e.g., education, incarceration status, insurance status, and zip code) • Prepregnancy height and weight • Pre-existing conditions ⚬ Psychosocial history ⚬ Substance use disorders ⚬ Mental health conditions ⚬ Other chronic conditions |
During and after current pregnancy | • Prenatal visits •Pregnancy weight • Obstetric history • Pregnancy-related infectious and noninfectious conditions • OUD treatment and other medications—including timing, dose, duration, and frequency when available ⚬ Opioid use before OUD treatment initiation ⚬ OUD pharmacologic treatment (methadone, buprenorphine ± naloxone, naltrexone, and other site-specific options) ⚬ Medically supervised withdrawal ± medications ⚬ Psychosocial/behavioral therapy o Opioid-related return to use ⚬ Overdose (opioid and nonopioid) • Maternal prenatal and postdelivery substance exposure test results • Recreational substance use—including timing, dose, duration, and frequency when available ⚬ Alcohol ⚬ CBD oil (e.g., vaped or ingested) ⚬ Cigarettes/cigarillos ⚬ Cocaine ⚬ Hallucinogens (e.g., LSD, PCP, and ecstasy) ⚬ Inhalants (e.g., glue, nitrous oxide, and felt tips) ⚬ Kratom ⚬ Marijuana (e.g., blunts, cannabinoids, hashish, and THC) ⚬ Methamphetamine ⚬ Other tobacco substances (e.g., vaping [e-cigarettes with nicotine], cigars, and smokeless tobacco [e.g., snus, snuff, chew, and hookah]) • Method of contraception at postpartum follow-up • Emergency department visits and nondelivery hospitalizations • Maternal death |
Delivery (maternal) hospitalization | • Pregnancy outcome • Plurality • Delivery complications, location, and type • Medications administered during labor and delivery • Discharge destination and length of hospital stay |
Birth (neonatal) hospitalization | • Infant sex • Measurements at birth or first measurement • Neonatal resuscitation measures in the delivery room • Newborn screening (e.g., blood spot testing, congenital heart disease, and hearing loss) • Newborn substance exposure test results • Newborn conditions, including the following: ⚬ Anemia ⚬ Asphyxia ⚬ ECMO, number of days on ECMO ⚬ Hemolytic disease ⚬ Interventricular hemorrhage ⚬ Intrauterine growth restriction/small for gestational age ⚬ Hyperbilirubinemia/jaundice ⚬ Necrotizing enterocolitis ⚬ Oxygen administered ⚬ PDA ⚬ Major congenital anomaly/birth defects ⚬ Sepsis ⚬ Vertical transmission of infectious diseases • NAS ⚬ NAS protocol ⚬ Newborn signs and symptoms related to NAS,a including the following: ◼ Autonomic dysfunction (e.g., sneezing, nasal congestion, yawning, fever, and cutaneous mottling) ◼ Diarrhea or loose stools ◼ Feeding problems (e.g., vomiting and poor feeding) ◼ Hypertonia ◼ Hyperactive Moro reflex ◼ Irritability (e.g., continuous, excessive, or high-pitched cry and poor sleep) ◼ Myoclonus ◼ Respiratory distress/symptoms ◼ Seizures ◼ Tremors • Pharmacologic newborn management, including timing, dose, duration, and frequency • Nonpharmacologic newborn management ⚬ Feeding method (e.g., breastfeeding or formula feeding) ⚬ Rooming-in • Hospitalization location(s) and length of stay • NICU admission • Newborn death before discharge • Discharge weight, destination, and newborn living situation • Discharge planning (e.g., plan of safe care, child protective services referral, and pediatrician identified for follow-up) • Readmission or emergency room visit after birth hospitalization within 28 days related to NAS, treatment given, and length of stay |
Child health history | • Primary care provider visits ⚬ Primary reason for visit ⚬ Growth measurements ⚬ Developmental and behavioral surveillance and results from screening instruments • Referral to specialists and receipt of services (e.g., WIC, Early Head Start, and Early Intervention [Part C]) • All diagnoses and medications • Laboratories (genetic, separate from newborn screen; lead; and infectious diseases) • Dates of hospitalization, emergency room or urgent care visits, and surgeries • Child death |
Signs and symptoms of NAS will be site specific and depend on the NAS protocols used at each site.
CBD, cannabinoid; ECMO, extracorporeal membrane oxygenation; ISD, lysergic acid diethylamide; PCP, phencyclidine; PDA, patent ductus artaiosus; THC, tetrahydrocannabinol; WIC, The Special Supplemental Nutrition Program for Women, Infants, and Children.