The goal of this observational study is to evaluate an innovative pediatric transitional care unit called the Jeroen Pit Huis (JPH). The primary objective of our study is to investigate whether an intermediate stay between hospital and home in the JPH have a favourable effect on healthcare consumption, patient, parent and family-relevant quantitative outcome measures, compared to discharge directly from a hospital ward. Parents will be asked to complete several questionnaires on three different time points (at discharge, 3 and 12 months of follow up).
Age: at term (older than 37 weeks corrected gestational age) and younger than 18 years
Admitted to the hospital with (a deterioration of) a chronic complex condition (CCC) [30] and/or (expected) continuous dependence on technology after discharge (see ad 2 below).
Expected need of specialized medical and/or allied health care after discharge
A stable medical condition and/or a set treatment regimen (see below ad 4)
None
The population exists of all children admitted to one of the four UMCs. The population will be predominantly CMC. CMC have one or more chronic conditions, functional limitations, high family identified needs, and a high use of healthcare resources \[1\]. Eligible participants fulfil all inclusion and no exclusion criteria.
Cohort
Prospective
Jeroen Pit Huis
Other interventionThe JPH is a unique and innovative Transitional Care Unit (TCU) situated in close proximity of the AUMC. In this TCU, patients and their family reside in separate private home-like apartments. The families can stay while practising in, and adapting to, their new reality until they are ready to transition home. A multidisciplinary team of healthcare experts (nurses, psychosocial care workers, family counsellors, and paediatricians) are gradually guiding parents towards taking on the role of their child's primary caregiver. This process is guided by a newly developed seven phase care path.One condition for staying in the JPH is that one parent is always present. In this form (24/7 parental stay and nursing care directly available under the supervision of pediatricians) the JPH is unique in the Netherlands.
Parental distress
Distress Thermometer for Parents (DT-P)
Quality of Life of children
Generieke Patient Reported Outcome Measures (GPROM) voor Kinderen
Growth weight parameters
Weight in kilograms
Growth length parameters
height in meters
Impact of having a CMC on parents' Quality of Life and family functioning
PedsQL FiM
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Academisch Medisch Centrum - Universiteit van Amsterdam (AMC-UvA)
Lead sponsor
ZonMw: The Netherlands Organisation for Health Research and Development
Collaborator
Erasmus Medical Center
Collaborator
Stichting Katholieke Universiteit- Radboudumc (RUMC), Netherlands
Collaborator
University Medical Center Groningen
Collaborator
UMC Utrecht
Collaborator
