Funded Projects

Problem:

Children with medical complexity (CMC) receive a variety of services through various agencies for a prolonged period. Our project provides care coordination services to families of CMC to 2 counties.

Goals and Objectives:

Goal 1: To improve access to comprehensive and coordinated care for CMC, and to provide emotional support for their families. Objective 1: Enroll at least 60 CMC in the program by the end of 5 years. Provide to them: care coordination, emotional support, and awareness of resources. Objective 2: Increase the proportion of participants reporting satisfaction with services received by 20% at the end of 5 years compared to baseline. Objective 3: Reduce health-care utilization (ER visits and hospitalizations and readmission rates) of CMC enrolled in the program by 10% compared to baseline. Goal 2: To increase the capacity of medical homes and agencies that serve CMC to provide family-centered, coordinated care to CMC. Objective 1: Serve children from at least 70% of practices in Guilford and Randolph counties. Objective 2: Increase by 10% in 5 years, the proportion of PCPs served by the program who report that they are "willing/ very willing" to provide care for CMC. Objective 3: Decrease the proportion of primary-care physicians served by the program who report that caring for CMC is 'somewhat/ very difficult' by 10% in 5 years compared to baseline.

Methodology:

CPECT-3 coordinators will work within a team with expertise caring for CMC, called the Pediatric Enhanced Care Program (PECP). A multidisciplinary Project Advisory Board (PECAC) will oversee activities and meet monthly. PECAC includes physicians, bereaved parents and community service providers. Early in the project, policies and procedures will be established, and a brochure produced. Brochures will be distributed to pediatric practices, community agencies. Children will be enrolled and the coordinator the will develop individualized comprehensive care plans for the children. Coordinators will assess and provide emotional support to families of CMC. Parents and PCPs will be surveyed both at enrollment and the end of the project period. 18-months after enrollment, a program evaluation survey will be administered. These tools will help us measure change over time and the impact of the services CPECT-3 provides. Health care utilization data (ER visits, hospitalizations and readmission rates) will be obtained through a Wake Forest Baptist Health administrative database. The coordinator will request the child's primary care practice to participate in the project and will regularly communicate with PCPs to help physicians provide care for the children enrolled. CPECT-3 will create educational materials for pediatricians and other health-care providers and participate in continuing medical education activities for health-care providers.

Coordination:

Community pediatricians will work with the team to provide coordinated care and provide resources to families, as well as Family Support Networks of Greater Forsyth and Guilford Co, Sally's Angels, Community Care of NC (CCNC), home health agencies, Care Coordination for Children (CC4C), Community Alternatives Program for Children (CAP-C), Pediatric Community Alliance, Partnership for Care, KidsPath, Title V, NC Pediatric Society, AAP, Brenner Children's Hospital.

Evaluation:

Evaluation tools include a database for demographic and data about encounters and goals of care for each child; a parent survey administered at the time of enrollment and again at the end of grant period; a PCP survey administered at the time of child's enrollment and at the end of the grant period; a program evaluation survey to measure program satisfaction, effectiveness of care coordination and emotional support; administrative data from our institution to assess health care utilization rate.

Experience to Date:

Aura Rosado replaced Marsha VanEpps (left the institution) as Care Coordinator. Dr. Savithri Nageswaran is the Project Director, Vanessa Ortiz is the Patient Navigator. Shannon Golden, research associate, is no longer involved in CPECT3.W e developed a spreadsheet to delegate workflow among staff. A REDCap database for participant enrollment and tracking was finalized. A Manual of Procedures developed for a prior project has been revised. Enrollment eligibility criteria, the baseline and follow-up caregiver surveys were finalized, as were the baseline and follow-up physician surveys. A program brochure in both English and Spanish was produced, and distributed to families who may be eligible for enrollment. Program brochure had to be revised to include all services of the Pediatric Enhanced Care Program including CPECT3A.t the time of this report, 19 children have been enrolled. For each child enrolled, we collected demographic data, and conducted a review of his/her medical record. So far we collected 16 of the 19 (84%) possible caregiver surveys; 13 of 15 (87%) possible physician surveys. A list of children eligible by county was established. Identifying eligible children in the targeted study counties was slow at first. We had estimated 12 children to be enrolled in Year 1 and we have exceeded this goal. Advisory board was already formed for previous projects. Technical Assistance visit was held on April 19th 2016.