Evaluation of Continuity of Care of Children With Special Health Needs

Study Overview
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Brief Summary
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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.

Official Title
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Children With Special Health Needs. Evaluation of Continuity of Care and Integrated Hospital-territory Care Pathways in Friuli Venezia Giulia

Conditions
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Children With Special Health Needs

Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Subjects with special health care needs requiring continuity of care and integrated home care Age between 0 to 17 years Residence in FVG region Outpatient, inpatient or emergency care admission at the IRCCS Burlo Garofolo hospital, Trieste, Italy Exclusion Criteria: -

Ages Eligible for Study
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Minimum Age: 1 Day
Maximum Age: 17 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | 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 | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Children, Special health needs, Continuity of care, Care coordination