Bridging Hospital to Home for Children with Medical Complexity and Their Families: the Effectiveness of a Transitional Care Unit (the "Jeroen Pit Huis")
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 入组人数
- 150
- 试验地点
- 1
- 主要终点
- Parental distress
研究概览
简要总结
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).
详细描述
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.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 0 Minutes 至 18 Years（Child, Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- 未提供
排除标准
- 未提供
结局指标
主要结局
Parental distress
时间窗: Baseline, 3 and 12 months of follow-up
Distress Thermometer for Parents (DT-P)
次要结局
- Quality of Life of children(Baseline, 3 and 12 months of follow-up)
- Growth weight parameters(Study inclusion, baseline, 3 and 12 months of follow-up)
- Growth length parameters(Study inclusion, baseline, 3 and 12 months of follow-up)
- Impact of having a CMC on parents' Quality of Life and family functioning(Baseline, 3 and 12 months of follow-up)
- Impact on parental employment(12 months of follow-up)
- Parental self-efficacy(Baseline, 3 and 12 months of follow-up)
- Parental anxiety(Baseline, 3 and 12 months of follow-up)
- Parental depression(Baseline, 3 and 12 months of follow-up)
- Parental sleep disturbance(Baseline, 3 and 12 months of follow-up)
- Parental Posttraumatic Stress Disorder (PTSD)(3 and 12 months of follow-up)
- Satisfaction of the parents with the received care(Baseline)
- Healthcare consumption - Length of hospital stay(During 12 months of follow-up)
- Healthcare consumption - Number of (PICU) readmissions(During 12 months of follow-up)
- Healthcare consumption - Emergency department visits(During 12 months of follow-up)
- Healthcare consumption - (un)planned outpatient visits(During 12 months of follow-up)
研究者
Clara van Karnebeek
Prof. dr.
Academisch Medisch Centrum - Universiteit van Amsterdam (AMC-UvA)