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Children and adolescents with special health care needs represent a small but relevant subset of the pediatric population due to high costs for the health care system, risk of lower quality of care, unmet health care needs, and negative health outcomes. Coordination of care and continuity of care are essential issues of appropriate care for these patients, as showed also by the "Special Needs Kids" project, carried out in Emilia Romagna. This project showed the potential for family pediatricians (FP) in Italy to serve as care coordinators and facilitate the implementation of integrated care pathways for children with special health care needs. In Friuli-Venezia Giulia (FVG), a system of "continuity of care" for patients with special needs was developed and implemented. This system integrate hospital and community care in a network involving also FPs, General Practitioner and different actors of social and health services. The aim of this study is to prospectively evaluate the continuity of care provided to children and adolescents with special health needs residing in the FVG region.
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| Measure | Description | Time Frame |
|---|---|---|
| To assess health care providers activities using the Special Needs Kids instrument | The Special Needs Kids (SpeNK)-FP instrument includes eight descriptive items aiming to collect information about the activity performed by the FP for the patients, involving the child or the family and including visit at the clinic, phone contact, ecc. In particular, SpeNK-FP evaluates: patient's clinical and social complexity on a three levels scale; requests or problems addressed; needs for care coordination; activities carried out by the FP; involvement of any other professionals in the care coordination activity; time spent for care coordination; FP's appraisal about the outcomes occurred and prevented with the care coordination activity. | Through study completion, an average of 12 months |
| To assess parents' perspective on continuity of care using the Special Needs Kids Questionnaire | The Special Needs Kids Questionnaire (SpeNK-Q) is a 20 items (with 5-point response option) questionnaire, evaluating parents' perspective about their relationship and interactions with: 1) the FP; 2) the main care coordinator; 3) the network of health care providers and services. SpeNK-Q includes two open questions aiming at identifying: 1) the person who is in charge of most of the child's health; (2) the person who coordinates the child's health care. The 5-point response option are: from "fully disagree" to "fully agree" for questions 1-7 concerning FP (lower scores indicates a worse outcome); form "never or almost never" to "always or almost always" for questions 8-20 concerning the network of health care providers and services. | At 10 months after enrollment |
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Inclusion Criteria:
Exclusion Criteria:
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The study involves pediatric patients with special health care needs recruited at IRCCS Burlo Garofolo over a 12-month period and followed prospectively for the next 12 months (follow-up)
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| Name | Affiliation | Role |
|---|---|---|
| Elisa Zanello, MSC | IRCCS materno infantile Burlo Garofolo | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| IRCCS Burlo Garofolo | Trieste | 34137 | Italy |
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