comprehensive care of children with medical complexity

Conditions: Quality of Life; Chronic Disease; Chronic Illness

Summary: under the auspice of 'specially for children and with funding from the seton healthcare family, children's comprehensive care (ccc) in austin, texas, has developed a coordinated and integrated model of care for children with medical complexity. this model serves as the patient's medical home (primary care provider, (pcp)), and uses extensivists (physicians who work as hospitalists and within the pcp) and nurse practitioners to provide continuous care between hospital and primary care. this model 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. this study is a randomized intervention trial that evaluates the effectiveness of the newly-created children's comprehensive care on two outcomes: utilization and cost of care; and, evaluation of the experience of parents and their families.

advances in medical technology and more effective treatment for life-limiting illness have allowed children with complex chronic conditions to survive not only the neonatal period but also their adolescent years, with an ever-increasing number living well into adulthood. often their families are not well prepared or supported. currently, outpatient pediatric health care services are designed primarily for episodic diagnosis and treatment of acute diseases, and are not designed to provide holistic, comprehensive, family-center care that is directed at improving the quality of life of these children and their families. there is usually no mechanism for effective coordination between subspecialists. as a result, care is fragmented, redundant, inefficient, and very costly. despite their small number, this population accounts for a disproportionate amount of the costs associated with pediatric medicine. furthermore, current services are rarely comprehensive and some services such as pain-management, sleep-management, life-span palliative care, and psychosocial and behavioral interventions (including transition to adult medicine) are often inconsistently accessible or non-existent. the investigators plan to enroll 450 patients into this study, randomizing about half to the new care at children's comprehensive care (ccc) and half to a control group which continues in the care that they are currently receiving. if they are randomized to the intervention group, the child will receive primary care, including preventative care, acute care, well checks, and immunizations from ccc. if this child is hospitalized at dell children's medical center (not including day surgery procedures), a practitioner from ccc will visit the child shortly after admission and collaborate with the hospital team to coordinate care at discharge. in addition, ccc will coordinate and monitor all other aspects of the child's medical, dental, behavioral, and developmental care, including the development of individualized care plans that are reviewed annually or with change of medical status, and implemented and maintained by ccc. other changes to care delivery include access to embedded palliative, developmental, and behavioral care; use of a consultant-model for specialist care; use of telemedicine, greater use of care coordination and case management; and, holistic care of child and family-including psycho-social screening and referral. ccc will use social workers, registered nurse (rn) case-managers, and a child life specialist to offer more holistic care coordination, family support, and case-management. if they are randomized to the control group they will continue in whatever type care they are currently being treated and will be given no clinical intervention by children's comprehensive care. the investigators' goal is to evaluate whether children who are patients at children's comprehensive care receive better care or not, as defined by cost and utilization, parent-report for quality and satisfaction, and impact-on-family. cost and utilization matrices include-hospitalizations, emergency department (ed) visits, and specialist visits within the seton system of care (locally, dell children's hospital, a member of the seton healthcare family is the only children's hospital in the austin area.) investigators will also evaluate quality and satisfaction using the consumer assessment of healthcare and system (cahps) 12-month survey with patient-centered medical home (pcmh), and impact-on-family using the pedsql family impact module (version 2.0). this study will seek to analyze three years worth of data.

Eligibility criteria:
inclusion criteria: * between the ages of birth to 17 years * has profound autism and one other significant medical condition * are determined by the study team to be complex when considering multiple diagnoses, functional impairment, use of medical technology, or contextual needs, or by a combination of these things exclusion criteria: * primary diagnosis is related to an oncologic diagnosis * primary diagnosis is cystic fibrosis * has down syndrome and does not have significant comorbid diagnoses

Keywords: medically complex children family experience in healthcare patient centered care family centered care case management care management care coordination care plan extensivist medical home children with special health care needs coordinated care quality in healthcare satisfaction in healthcare cost utilization impact on family quality of life palliative care complex chronic conditions life-limiting illness integrative care primary care comprehensive care behavioral care