Children with Complex Chronic Conditions comprise only 1-3% of the pediatric population, but account for up to 40% of all pediatric health expenditures. Within current systems these children and their families often receive care that is fragmented and lacks continuity. Family support is often not available and care focuses on acute episodes, rather than comprehensive medical care of the whole child and family. An innovative medical home clinic was created to address these gaps in care. This model uses extensivists (physicians who work as hospitalists and within the PCP) and nurse practitioners to provide continuous care between hospital and primary care. It seeks to provide a system of care that more fully meets the complex needs of the child and family, while implementing innovations in care delivery, fully implementing family-centered practice, and “embedding” behavioral, psychiatric, psychosocial, and palliative care.

Dr. Barbara Jones is a co-investigator on this research project at Specially for Children–Complex Care Clinic (Dell Children’s Medical Center) in Austin, Texas. The study is a randomized intervention trial that evaluates the effectiveness of the clinic on two outcomes: utilization and cost of care; and evaluation of the experience of parents and their families. Investigators enrolled 300 patients into the randomized controlled study, with the intervention group being enrolled into the new clinic care and the control group continuing in usual care.

Primary outcome measures include change in healthcare utilization and cost of care assessed every two months for three years.The investigators will compare cost and utilization between children enrolled into the intervention group and the usual care group, including ED visits, hospitalizations, and specialist visits. Secondary outcome measures include: a) change in quality and satisfaction, using the CAHPS Clinician & Group Survey, Version: 12-Month Survey with Patient-Centered Medical Home; b) change in family impact, using the PedsQL Family Impact Module; c) change in family experience, using qualitative interviews.