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OpenTrials
Completed

NCT Number: NCT05803291

Evaluation of Continuity of Care of Children With Special Health Needs

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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Key information

Conditions

Children With Special Health Needs

Age range

1 day–17 year

Sex eligibility

All sexes

Study type

Observational

Primary location

IRCCS Burlo Garofolo

Trieste, 34137, Italy

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

-

Treatment and study plan

Primary outcomes

  1. To assess health care providers activities using the Special Needs Kids instrument

    Time frame: Through study completion, an average of 12 months

    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.

  2. To assess parents' perspective on continuity of care using the Special Needs Kids Questionnaire

    Time frame: At 10 months after enrollment

    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.

Sponsors and collaborators

Lead sponsor

IRCCS Burlo Garofolo

Other

Registry information

Official study title

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

Important dates

Study start
2018
Primary completion
2021
Study completion
2021
First posted
Apr 7, 2023
Registry last updated
Apr 7, 2023

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.