Improving Care for Children With Complex Needs

Children with complex health care needs often lack a comprehensive care plan and access to
case management. They are at risk for frequent and prolonged hospitalizations, fragmented
care, parental stress/burnout and unsafe care. To address this issue, Seattle Children's
Hospital developed the Comprehensive Case Management (CCM) program, which includes access to
a special clinic at Seattle Children's with case managers and a health care team that works
with parents and community physicians to create care plans for children with complex needs.

The investigators goal is to evaluate whether children who participate in the CCM program
have better parent reported access to needed care, timeliness of receiving needed services,
more coordinated care, improved health status, and higher parent satisfaction with care
compared to children who receive care outside the CCM program. In addition, the
investigators will examine whether these children experience decreased annual costs of care,
emergency department visits, hospital admissions, and hospital lengths of stay compared to
children receiving care outside the program. The investigators also want to understand
whether community physicians who have patients enrolled in the CCM program are more
satisfied with caring for children with complex medical needs than physicians caring for
these children outside the program.

The investigators plan to enroll 650 parents of eligible children into the I3CN study. Three
hundred twenty five of these parents will have children enrolled in the CCM program and 325
will have children who continue to receive usual care. Enrolled parents complete a survey
every 6 months during the study (5 surveys over 2 ½ years) in order to assess study outcomes
including parent perceived. Parent participation in the study will be completed 2 ½ years
after enrollment.

When a child enrolls in the CCM program, the child's parent will work together with the CCM
team at Seattle Children's to develop a shared care plan for their child. The CCM team
includes physicians, nurse practitioners, social workers, nutritionists, and nurse case
managers. This plan will include all of the child's routine health care needs in addition
to information about what to do when the child gets sick. Community providers will also be
asked to review and provide input on the shared care plan. Once the shared care plan is in
place, the parent, PCP, and the CCM clinic will follow the standardized processes
established by the program and the shared care plan when the child becomes ill.

During the course of the 2 ½ year study, the investigators will analyze our outcomes of
interest every 6 months. If the investigators find that children in the CCM the program are
experiencing significantly better outcomes than children receiving care outside the program,
they will stop the study and open the program to all eligible children.

Inclusion Criteria:

- between the ages of 3 months and 18 years,

- have at least three chronic medical conditions requiring active management

- were hospitalized or had an ED visit at SCH within the last year

- their PCP is enrolled in the study

Exclusion Criteria:

- had 2+ visits to Pulmonary, Craniofacial, or Rheumatology within the last year

- had 3+ visits to Nephrology, Gastroenterology and has either Short Gut Syndrome or
Crohn's Disease, Endocrinology or Neuromuscular Clinic within the last year

- has had 2+ visits to the Neurodevelopmental clinic and is followed by a NDV doctor

- cancer patient

- transplant recipient

- has cystic fibrosis, muscular dystrophy or sickle cell anemia

- has Down Syndrome and does not have any other medical issues aside from developmental
delays

- renal patient on dialysis

- had a hospitalization for > 27 days