Children With Special Health Care Needs: Child Health and Functioning Outcomes and Health Care Service Use

J Pediatr Health Care. Nov-Dec 2016;30(6):590-598. doi: 10.1016/j.pedhc.2015.12.003. Epub 2016 Jan 28.

Abstract

This study describes health, functioning, and health care service use by medically complex technology-dependent children according to condition severity (moderately disabled, severely disabled, and vegetative state). Data were collected monthly for 5 months using the Pediatric Quality of Life Generic Core Module 4.0 Parent-Proxy Report. Health care service use measured the number of routine and acute care office visits (including primary and specialty physicians), emergency department visits, hospitalizations, nursing health care services, special therapies, medications, medical technology devices (MTDs), and assistive devices. Child physical health was different across the condition severity groups. The average age of the children was 10.1 years (SD, 6.2); the average number of medications used was 5.5 (SD, 3.7); the average number of MTDs used was 4.2 (SD, 2.9); and the average number of assistive devices used was 4.3 (SD, 2.7). Severely disabled and vegetative children were similar in age (older) and had a similar number of medications, MTDs, and assistive devices (greater) than moderately disabled children. The advanced practice nurse care coordinator role is necessary for the health and functioning of medically complex, technology-dependent children.

Keywords: Children with special health care needs; health-related quality of life; medical technology–dependent; medically complex; pediatric nurse practitioner.

MeSH terms

  • Adaptation, Psychological
  • Adolescent
  • Child
  • Child, Preschool
  • Day Care, Medical* / statistics & numerical data
  • Disabled Children* / statistics & numerical data
  • Female
  • Health Services Needs and Demand
  • Hospitals, Pediatric*
  • Humans
  • Long-Term Care* / statistics & numerical data
  • Longitudinal Studies
  • Male
  • Pediatric Nurse Practitioners*
  • Persistent Vegetative State / epidemiology*
  • Persistent Vegetative State / therapy
  • Quality of Life
  • Specialization
  • United States / epidemiology
  • Young Adult