Analysis of the Hospital Node in the Management of Acute Events of Patients Referred to Pediatric Palliative Care

This study aims to analyze the role of the hospital node in the acute event management of pediatric patients referred to Pediatric Palliative Care. Patients eligible for pediatric palliative care experience frequent hospitalizations. In oncology patients, hospitalizations are mainly for the treatment of the disease and the performance of diagnostic and/or therapeutic procedures, whereas in the case of non-oncology children, admissions occur particularly for the occurrence of complications, which may affect different organs and systems. Hospitalization times are on average longer, so much so that in some cases they can even exceed 100 consecutive days, and have a high risk of re-hospitalization.

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Key information

Conditions

Pediatric Palliative Care

Sex eligibility

All sexes

Study type

Observational

Primary location

IRCCS Azienda Ospedaliero - Universitaria di Bologna, U.O. Cardiologia Pediatrica, Bologna, Italy

About this study

In Italy, the prevalence of children needing CPP is estimated at 34-54 per 100,000 population, for a total number between 20,000 and 35,000 children. Prevalence data and projections performed on the British population show that children with life-limiting conditions are progressively increasing. The reason for this increase can be attributed to medical and technological advances that have enabled reductions in neonatal and pediatric mortality and increased the survival of pediatric patients with severe and life-threatening disease. Caring for these patients is complex as they require specific medical and management knowledge and coordination within the health care system. The care of children with medical complexity is interdisciplinary, with different professionals playing a central role for these children. Teamwork is necessary not only for responding to clinical problems but also for defining goals of care and for communication to the patient and family.

Who can participate

Healthy volunteers accepted: No

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

Inclusion criteria

Living patients aged <18 years at the time of the event
Patients with conditions eligible for PPCs according to Association for Children's Palliative Care/Royal College of Pediatrics and Child Health

Exclusion criteria

Treatment and study plan

Primary outcomes

Quantification of the number of emergency room admissions

Time frame: through study completion, an average of 1 year

Number of admissions to the PS
hospital admissions of the pediatric population eligible for Pediatric Palliative Care at the OUs involved in the study.

Time frame: through study completion, an average of 1 year

number and duration of hospitalization episodes by year, with prevalence calculation.

Study contacts

Contact information is provided by the study sponsor or research team.

Daniele Zama, MD

CONTACT

[email protected]

0512144622

Sponsors and collaborators

Lead sponsor

IRCCS Azienda Ospedaliero-Universitaria di Bologna

Other

Registry information

Acronym: NO_SCUSE

Important dates

Study start: 2024
Primary completion: 2029
Study completion: 2029
First posted: Jan 29, 2025
Registry last updated: Jan 29, 2025

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.

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