Impact of Serious Pediatric Illness on Parent and Sibling Health

Children's Hospital of Philadelphia (CHOP)

Status: Completed

Conditions: Family Members of: Children Severe Neurological Impairment; Family Members of: New Pediatric Oncology Patients; Family Members of: Newborns Extremely Premature; Family Members of: Critical Congenital Heart Defect Patients

Study type: Observational

Funder types: Other

Identifiers

NCT03971344

FP00024612

Details and patient eligibility

About

To estimate the impact of having a child with serious illness (SI) on the health and healthcare of other members of the child's family.

Full description

Although standard pediatric practice, when caring for a child with serious illness, is to provide support to the child's parents and any siblings, little quantitative information exists regarding what could be considered the "collateral impact" on other family members of having a child with serious illness in the family. This study seeks to provide such information, using existing claims data from the health insurance company, Cigna, to identify children with serious illness and then examining the health and health care of their family members. The investigators hypothesize that, compared to control families without a sick child, parents and siblings of children with serious pediatric illness (SPI) will have more new mental and physical health diagnoses, more new prescriptions, increased levels of Emergency Department (ED) and acute care services, and reduced levels of use of recommended chronic disease management for pre-existing conditions and of preventative services.

Enrollment: 161,000 patients

Sex: All

Volunteers: No Healthy Volunteers

Inclusion criteria

• Cigna customers as follows:

  1. Neonatal Intensive Care Unit (NICU) cohort: infants born at 30 weeks gestational age or less, or with a birthweight less than 1500 grams.
  2. Critical Congenital Heart Disease (CCHD) cohort: Newborns with critical congenital heart defects who undergo surgery by 12 months of life.
  3. Oncology cohort: Patients with new onset (not relapses) pediatric oncologic diagnoses including liquid, solid, and brain cancer.
  4. Severe Neurological Impairment (NI) cohort: Patients with severe neurologic impairments, associated with substantial functional impairment, relentless progressive deterioration, or substantially shortened life-spans.

• For each index patient in a particular SPI cohort, Investigators randomly identified up to four children of the same ages as the index patient but who do not have the specific SPI. The matching by age was as follows: in months if < 3 years; and in years if age > or = 3 years. Cigna then identified all family members, using both definitions of "family members" described above.

Exclusion criteria

Trial design

161,000 participants in 4 patient groups

Family members of newborns extremely premature

Description:

Parents and siblings (if any) of infants born at 30 weeks gestational age or less, or with a birthweight less than 1500 grams.

Family members of new pediatric oncology patients

Description:

Parents and siblings (if any) of patients with new onset (not relapses) pediatric oncologic diagnoses including liquid, solid, and brain cancer.

Family members of critical congenital heart defect patients

Description:

Parents and siblings (if any) of newborns with critical congenital heart defects who typically undergo surgery by 12 months of life.

Family members of children with severe neurological impairment

Description:

Parents and siblings (if any) of patients with severe neurologic impairments, associated with substantial functional impairment, relentless progressive deterioration, or substantially shortened life-spans.