Changing the Way We Approach Medically Complex Children: A Screener for Unmet Needs

Abstract

Medically complex children have at least one chronic condition resulting in high service needs, including medication, equipment and multiple subspecialist involvement. Evidence has shown that increased care coordination reduces the number and length of hospital stays, and decreases healthcare costs. The Rainbow Medical Home Initiative (RMHI) at Children’s Hospital Primary Care Center targets the medical and social care coordination needs of this population. In 2011, 91.3% of caretakers reported unmet needs in at least one of the following areas: medical equipment, medical supplies, educational and therapy services, mental health support, recreational/social opportunities and home caregiver support. 47.1% reported unmet needs in 3 or more areas. The objectives of this project are: 1) develop a screener for unmet needs amongst RMHI families; and 2) assess the acceptability and feasibility of incorporating this screener into routine care. If successful, this screener will allow providers to more proactively address patients’ unmet needs. Two focus groups and 4 individual cognitive interviews of families were performed to evaluate the completeness, format and literacy level of a draft of the screener. The screener was piloted during the summer of 2012 at patient visits. Feedback on the acceptability and feasibility of screener implementation was solicited through surveys from stakeholders (patient families, providers, social work and administrative staff). Qualitative feedback was solicited in group format from stakeholders to elicit process issues not accounted for by our surveys. Feedback was incorporated into a more refined screener that was distributed during the second half of summer. A similar feedback cycle was performed to develop the final screener. Major unmet needs identified by the 70 completed screeners are: securing educational services (12/25, 48%), finding people or programs parents can trust to help care for their child (22/68, 32%) and finding recreational/social opportunities (21/69, 30%). The 74 stakeholders queried generally agree that the screener helps identify needs and improves communication between providers and families. Most stakeholders believe that the screener is feasible to incorporate into routine practice. This project will improve the effectiveness and efficiency of our medical home by enhancing our understanding of our patients’ non-medical issues. Future directions include screener incorporation into routine practice; screener translation into Spanish; ongoing data collection of unmet needs; development of resources to respond to these needs; dissemination of results to clinical care teams and training on resources designed to address them.