Healthcare system supports for young adult patients with pediatric onset chronic conditions: a qualitative study

J Pediatr Nurs. Jan-Feb 2015;30(1):126-32. doi: 10.1016/j.pedn.2014.09.015. Epub 2014 Oct 13.


Over 90% of children with chronic conditions survive into adulthood necessitating primary care teams to care for adults with pediatric-onset chronic conditions. This study explores practice supports and barriers to care for this population via qualitative techniques. Using in depth interviews with twenty-two healthcare providers practice supports identified include: formalizing intake processes, interoperable electronic medical records, and leveraging care coordination. Barriers identified included: definition of the medical team, lack of appropriate medical records, time and administrative burden, lack of training, and financial constraints. Themes may be utilized to design interventions and improve care coordination for patients with pediatric-onset chronic conditions.

Keywords: Healthcare systems; Medical home; Qualitative methods.

MeSH terms

  • Adolescent
  • Age of Onset
  • Attitude of Health Personnel
  • Chronic Disease / epidemiology
  • Chronic Disease / psychology
  • Chronic Disease / therapy*
  • Cross-Sectional Studies
  • Delivery of Health Care / organization & administration*
  • Female
  • Humans
  • Interviews as Topic
  • Male
  • Needs Assessment
  • Patient Outcome Assessment
  • Patient-Centered Care / organization & administration
  • Pediatrics
  • Philadelphia
  • Primary Health Care / methods*
  • Qualitative Research
  • Transition to Adult Care / organization & administration*
  • Young Adult