Bridging Hospital to Home for Children with Medical Complexity and Their Families

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).

Rationale: Children with Medical Complexities (CMC) often require 24/7 expert care for which often prolonged (re)admissions in a university medical centre (UMC) are necessary which, in turn, impedes discharge home. Hospital to home transitions of CMC is a multi-faceted process with many challenges and obstacles. This protocol describes the evaluation of an innovative Transitional Care Unit (TCU) called the Jeroen Pit Huis (JPH), that aims to supports this transition. Hypothesis: We hypothesize that an intermediate stay between hospital and home in the JPH will have a favourable effect on healthcare consumption, patient, parent and family-relevant quantitative outcome measures, compared to discharge directly from a hospital ward. Objective: The primary objective of our study is to investigate whether an intermediate stay between hospital and home in the JPH lowers parental distress compared to discharge directly from a hospital ward. Furthermore, the effect on quality of life (QoL) in children and parents, growth, family functioning, impact on parental employment, parental self-efficacy, anxiety, depression, sleep disturbance, posttraumatic stress (PTSD), care satisfaction, and healthcare consumption will be assessed with and without an intermediate stay in the JPH. Study design: Multicenter quasi-experimental prospective cohort study Study population: Patients (term newborns up to the age of 18 years) who; (1) are admitted in the hospital with (a deterioration of) a chronic complex condition (CCC) and/or have (expected) continuous dependence on technology after discharge; (2) require specialized medical and/or allied health care after discharge; (3) are medically stable and/or have a set treatment regime and; (4) are not yet ready to be discharged home due organization-, care- or family circumstances. Intervention (if applicable): Not applicable, since the JPH is the standard of transitional care in the Amsterdam UMC. Main study parameters/endpoints: Primary outcome measure at TCU/hospital discharge, 3 and 12 months of follow-up 1. Parental distress Secondary outcome measures 2. Quality of Life of children at JPH/hospital discharge, 3 and 12 months of follow-up. 3. Growth parameters (weight, length, head circumference) at study inclusion, JPH/hospital discharge, 3 and 12 months of follow-up. 4. Impact of having a CMC on parents' Quality of Life and family functioning at JPH/hospital discharge, 3 and 12 months of follow-up 5. Impact on parental employment at 12 months of follow-up 6. Parental self-efficacy, anxiety, depression, sleep disturbance at JPH/hospital discharge, 3 and 12 months of follow-up. 7. Parental Posttraumatic Stress Disorder (PTSD) at 3 and 12 months of follow-up 8. Satisfaction of the parents with the received care at JPH/hospital discharge 9. Healthcare consumption during 12 months of follow-up Nature and extent of the burden and risks associated with participation, benefit and group relatedness: Subjects do not benefit personally from study participation. This non-therapeutic research with minors will have negligible risks. The main burden of participation in this study is the need to complete several questionnaires in total on three different time points. The expected required time-investment of the children and their caregivers is approximately 2.5 hours in total (around 50 minutes at 3 different time points). Furthermore, it requires time and effort from physicians to screen and patients for inclusion.