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

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.