The Special Needs Kids (SpeNK) Project. Lessons learned and future perspectives.

AIMS. To assess integrated healthcare pathways for children with special health care needs after hospital discharge from St. Orsola Malpighi University Hospital of Bologna and Local Health Authorities of Bologna and Imola. MATERIALS AND METHODS. Existing procedures were assessed through interviews with key informants and collection of written procedures. During 24 months, children meeting inclusion criteria as incident cases were recruited at discharge with their families. During 9 months of follow-up parents' perspective was assessed with qualitative methods (SpeNK-I) and the administration of a 20-item questionnaire (SpeNK-Q), after its validation in a sample of parents of 101 preterm newborns. During follow-up, Family Pediatricians (FPs) recorded care coordination activities for subjects with an 8-item data collection tool (SpeNK-FP). Utilization of healthcare resources was examined through data-linkage with administrative databases. RESULTS AND DISCUSSION. Different practices and procedures exist, with different level of standardization and formalization within Bologna province. A sample of 82 children was recruited, with a majority of extremely low birth weight newborns (42.6%). To 16 parents involved in SpeNK-I, continuity of care and empowerment were important, with different issues from hospitalization to home care. The SpeNK-Q administered to parents of 67 children reported high levels of continuity of care, with items referring to the informational continuity endorsed with the lowest frequency. Forty FPs recorded 382 encounters for 49 children, showing some difficulty to record these activities and a potential for care coordination. Administrative data analyses showed a higher level of utilization of healthcare services for hospitalizations, some differences in specialty outpatient care use with almost none in emergency room contacts. CONCLUSIONS. In Bologna province, children with special health care needs run a continuous and coordinated integrated healthcare pathway although with some weaknesses. Connecting users', professionals' and system's viewpoints may facilitate the identification of improvement areas to reduce risk of fragmentation.