Actively Recruiting
Led by Academisch Medisch Centrum - Universiteit van Amsterdam (AMC-UvA) · Updated on 2024-09-19
150
Participants Needed
1
Research Sites
52 weeks
Total Duration
A
Academisch Medisch Centrum - Universiteit van Amsterdam (AMC-UvA)
Lead Sponsor
Z
ZonMw: The Netherlands Organisation for Health Research and Development
Collaborating Sponsor
Researchers are evaluating an innovative pediatric transitional care unit called the Jeroen Pit Huis (JPH) to support children with medical complexities (CMC) as they transition from hospital to home. The study aims to see if an intermediate stay at the JPH affects healthcare use and improves outcomes for patients and their families compared to going home directly from the hospital. This is an observational, multicenter study enrolling children from newborn to 18 years old who have chronic complex conditions and require specialized care after discharge but are not yet ready to go home due to medical or family reasons. The JPH offers private, home-like apartments near the hospital where families can stay while learning to manage their child's care with help from a team of nurses, psychosocial workers, counselors, and pediatricians. One parent stays with the child 24/7 during this period. The study compares families who use the JPH with those who go directly home after hospital discharge from various medical centers. No experimental treatments are given, as the JPH is standard care in this setting. Participants and their parents will complete questionnaires at discharge, 3 months, and 12 months to measure parental distress, quality of life, growth, family functioning, employment impact, anxiety, depression, sleep, PTSD, and satisfaction with care. Healthcare use such as hospital stays and emergency visits will also be tracked over 12 months. The study requires about 2.5 hours total for questionnaire completion, with minimal risk. This will help understand how an intermediate care unit like the JPH affects outcomes for children with complex medical needs and their families.
CONDITIONS
Bridging Hospital to Home for Children with Medical Complexity and Their Families
You may qualify if you...
You will not qualify if you...
Complete this quick 3-step screening to check your eligibility
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Variable length until ready to transition home
Participants who have an intermediate stay in the Jeroen Pit Huis (TCU) reside in private home-like apartments with their families. During this stay, a multidisciplinary team supports parents in adapting to their new caregiving role before transitioning home.
Continuous stay with 24/7 parental presence
Duration - Variable length until discharge home
Participants who transition directly from the hospital to home without an intermediate stay in the Transitional Care Unit are observed during this phase.
Usual hospital discharge procedures apply
Duration - 12 months of follow-up
Participants are followed for up to 12 months after discharge to monitor parental distress, child and family quality of life, growth, parental mental health, healthcare consumption, and other outcomes.
3 visits (at baseline/discharge, 3 months, and 12 months; questionnaires completed at each timepoint)
Total: 1 location
1
Amsterdam University Medical Centre
Amsterdam, Netherlands
Actively Recruiting
H
Heleen N Haspels, Msc
C
Clara Van Karnebeek, Prof. Dr.
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
2
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Heleen N Haspels, Misja C Mikkers, Hennie Knoester...
https://pubmed.ncbi.nlm.nih.gov/40254310