Pediatric chronic pain and caregiver burden in a national survey

Background and aims Caring for children with chronic pain incurs burdens of cost and time for families. We aimed to describe variation in caregiver burden among parents of adolescents with chronic pain who responded to a nationally-representative survey. Our secondary aim was to identify child and parent characteristics associated with increased caregiver burden. Methods We used de-identified, publicly-available data from the 2016 National Survey of Children's Health (NSCH), designed to be representative of non-institutionalized children in the United States. We analyzed data for households where an adolescent age 12-17 years old was reported by a parent to have chronic pain. Outcomes included the parent's time spent on the child's health needs, reduced labor force participation, and out-of-pocket medical costs. Results Data on 1,711 adolescents were analyzed. For adolescents with chronic pain, 15% of parents reported spending at least 1 h/week on their child's health care, 14% reported cutting back on paid work, and 36% reported spending ≥$500 on their child's health care in the past 12 months. Adolescents' general health status and extent of specialized health care needs predicted increased caregiver burden across the three measures. Conversely, no consistent differences in caregiver burden were noted according to demographic or socioeconomic characteristics. Conclusions Among adolescents with chronic pain identified on a nationally-representative survey, parents frequently reported reducing work participation and incurring out-of-pocket expenses in providing health care for their child. Caregiver burdens increased with indicators of greater medical complexity (e.g. presence of comorbidities, need for specialized health care) and poorer overall adolescent health status. Implications We add a national-level perspective to studies previously performed in clinical samples addressing caregiver burden in pediatric chronic pain. Initiatives to reduce the burden of caring for children with chronic pain, described in prior work, may be especially beneficial for families with adolescents whose chronic pain is accompanied by other health problems or requires coordination of care among multiple providers.