Supporting Children with Medical Complexity: A Collaboration to Provide Patient Navigation Services

Full Description:

Background: Nearly 38,000 children in South Dakota (SD) are classified as children with a special health care need (CSHCN). A subset of these children, those with complex medical conditions (CMC), often require services from multiple systems, and from multiple specialties within these systems, increasing the need for coordinated, comprehensive services that lead to optimal outcomes.

Through a unique collaboration, the SD Department of Health partnered with Sanford Children’s Hospital and Specialty Clinic to establish a comprehensive Patient Navigation Program for children with CMC. Care coordination services tailored to CMC have improved health outcomes and costs of providing care. The purpose of this project was to examine the outcomes of participation in the program one year after enrollment.

Methods and Population: Over 800 children with CMC were identified as potential participants. Of these, a cohort of 30 families were recruited using outlined eligibility criteria. Outcomes were examined using medical record data and a pre/post survey. The survey assessed family needs, receipt of care coordination, care planning, cost considerations, and perceptions of communication across family stakeholders before and after program participation. The post survey also included questions on satisfaction with services provided.

Results: Twenty-two of 28 eligible families completed the survey (response rate of 79%). Receipt of care in a medical home increased substantially with just 13.6% receiving care in a medical home at enrollment, and 50.0% at one-year follow-up. Awareness of the shared plan of care also increased from 18% aware at enrollment to 77% at one-year. Nearly 60% of families indicated they were not receiving necessary assistance with care coordination for the child at enrollment. By post-survey, no families identified unmet needs for care coordination, with 91% reporting receipt of assistance (and 9% no assistance needed). Satisfaction with the program was high with a mean of 89.7% of respondents selecting ‘very satisfied’ across the specific services assessed. Past year medical visit days, hospital admissions and emergency department visits were not significantly changed between enrollment and post-survey. The number of past year cancelled and no show visits dropped from 213 visits across all participants at enrollment to 133 visits one-year after participation, an important improvement.

Conclusions and Next Steps: Analysis shows vast improvements in receipt of care in a medical home, awareness and use of a shared plan of care, satisfaction with the healthcare team, and far fewer unmet needs just one year after enrolling in the program. Recruitment began for a second cohort of patients, with income eligibility criteria set at 250% of the federal poverty guidelines. An advanced practice provider will begin with the Sanford Patient Navigation Program by the end of the year to enhance services offered to families.

Abbreviated Description: Through a unique collaboration, the South Dakota Department of Health partnered with Sanford Children’s Hospital and Specialty Clinic to establish a comprehensive Patient Navigation Program for Children with Medical Complexity. The program aims to aid families in coordinating complex care across the medical system, provide referrals to community resources, decrease costs of unnecessary or redundant travel, and promote shared plans of care.

Outcomes for the 30-family cohort were examined using medical record data and a pre/post survey. Analysis shows vast improvements in receipt of care in a medical home, awareness and use of a shared plan of care, satisfaction with the healthcare team, and far fewer unmet healthcare needs just one year after enrolling in the program.