Healthcare System Supports for Young Adult Patients with Pediatric Onset Chronic Conditions: A Qualitative Study

• Published in: Journal of pediatric nursing Vol. 30; no. 1; pp. 126 - 132
• Main Authors: Szalda, Dava E., Jimenez, Manuel E., Long, Jeremiah E., Ni, Amelia, Shea, Judy A., Jan, Sophia
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01-01-2015; W.B. Saunders Company/JNL
• Subjects: Adolescent; Age of Onset; Attitude of Health Personnel; Chronic Disease - epidemiology; Chronic Disease - psychology; Chronic Disease - therapy; Chronic illnesses; Cross-Sectional Studies; Delivery of Health Care - organization & administration; Female; Healthcare systems; Humans; Interviews as Topic; Male; Medical home; Needs Assessment; Patient Outcome Assessment; Patient-Centered Care - organization & administration; Pediatrics; Philadelphia; Primary care; Primary Health Care - methods; Qualitative methods; Qualitative Research; Social support; Transition to Adult Care - organization & administration; Young Adult; Young adults; Medical home; Qualitative methods; Healthcare systems
• ISSN: 0882-5963; 1532-8449
• DOI: 10.1016/j.pedn.2014.09.015

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.