Mica | EPICE-PT

EPICE-PT - Effective Perinatal Intensive Care in Europe

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The EPICE project explored the use of evidence based practices for the care of very preterm infants in 19 regions from 11 EU Member States. These regions cover more than 750000 deliveries per year, 550 units of obstetrics, 250 units of neonatology and about 10,000 very preterm infants.
Very preterm infants born before 32 weeks of gestation represent 1 to 2% of all births; these infants face higher risks of mortality and long-term neurodevelopmental impairment than infants born at term.

The EPICE project aimed to improve the survival and long-term health of preterm infants by ensuring that medical knowledge is translated into effective perinatal care. Promoting the use of evidence-based guidelines is a promising and cost-effective approach for improving care and for optimizing health outcomes for these infants. Longer term follow up of this cohort is continuing in the SHIPS study.

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Investigators	Contacts
Henrique Barros Instituto de Saúde Pública da Universidade do Porto (ISPUP) Henrique Barros Name Henrique Barros Email hbarros@med.up.pt Phone +351 910624580 Institution Instituto de Saúde Pública da Universidade do Porto (ISPUP) Address Rua das Taipas nº135 Porto Portugal	Julia Doetsch Instituto de Saúde Pública da Universidade do Porto (ISPUP) Julia Doetsch Name Julia Doetsch Email jndoetsch@ispup.up.pt Phone +35 1935828310 Institution Instituto de Saúde Pública da Universidade do Porto (ISPUP) Address Rua das Taipas nº135 Porto Portugal

Overview

Acronym: EPICE-PT
Start Year: 2011
Follow Up Is Ongoing
Year of Most Recent Data Collection: 2019
New Data Collection planned?: Yes
Funding: EPICE: European Union Seventh Framework Programme (FP7/2007‐2013) Grant Number: 259882
SHIPS: European Union Seventh Framework Programme (FP7/2015‐2018). Grant Number: 633724

Access

Access to external researchers or third parties neither provided nor foreseen.

Supplementary Information

Perinatal data and some follow-up data were collected in 10 of the regions in 2003 as part of the MOSAIC study forming the basis for this study.

Study Design

Study design: Cohort
Number of Data Collection Events: 6
Number of very preterm (VPT) and/or very low birthweight (VLBW) births included in cohort (live & still births): 974
Supplementary information about number of participants: 724 livebirths of 974 preterm births.
607 discharged alive
544 consented for follow up.

Marker Paper

Barros, H., et. al. Effective perinatal intensive care in europe (EPICE): Descrição do Projeto e primeiros resultados em Portugal. Arquivos de Medicina, 28(6), 183-190

Timeline

Population

The EPICE-PT cohort comprised all live and still born VPT infants in two regions of Portugal. All public maternity and neonatal intensive care units in Lisbon and Tagus Valley Region (8 units) and Northern Region (9 units), plus 3 private units within the Lisbon and Tagus Valley Region were included. Units with 10 or more admissions of very preterm newborns, in the first 48 hours postpartum were eligible to take part in the study.

Selection Criteria

Countries

Portugal

Geographical Area

Northern Region, Lisbon and Tagus Valley Region

VPT/VLBW Group Inclusion Criteria

All live and still births between 22 + 0 and 31 + 6 weeks of gestation.
Birth occurred between 1st June 2011 and 31st May 2012.

Control Group Inclusion Criteria

n/a

VPT/VLBW Group Exclusion Criteria

none

Control Group Exclusion Criteria

n/a

Data Collection Events

Name

Description

Start

End

Perinatal Assessment

Overview

Perinatal data were collected from obstetric and neonatal medical records using a pretested standardised questionnaire as part of the main EPICE study.
Maternal and infant health characteristics (e.g. maternal complications), maternal and infant socioeconomic status and demographic characteristics, maternal obstetric and medical history (e.g. number of previous births), details of pregnancy and delivery and interventions during pregnancy, labour and postnatal treatment, infant health and medical treatment (general health, BPD, Brain lesions, infections, ROP, NEC, PDA, congenital anomalies, other morbidities; death in utero) and nutrition during the neonatal period (e.g. breastfeeding) were recorded. Data were also collected on hospitalisation history and outcomes at death/discharge. Additionally, data were collected on the characteristics and practices of health care services (e.g. maternity and neonatal units) such as policies, protocols, unit activity levels decision making processes etc.

Supplementary Information: 724 livebirths of 974 preterm births.
607 discharged alive
544 consented for follow up.
Start Date: 2011
End Date: 2012

Data sources

Questionnaires
Physical measures

Participants

Age at Data Collection Event (years): 0

	VPT/VLBW Group	Control Group
Survived	724
Invited	724
Assessed	724

Perinatal data were collected from obstetric and neonatal medical records using a pretested standardised questionnaire as part of the main EPICE study.
Maternal and infant health ...

2011

2012

1 Year Follow up

Overview

The 1 year data collection involved a Portuguese sub-cohort of the EPICE population consisting of all infants discharged alive from NICU whose parents provided informed consent to take part in the follow up study.

Data were collected on nutritional supplements, cognitive and motor development, sleep behaviour and parent-rated health status.

Start Date: 2012
End Date: 2013

Data sources

Questionnaires

Participants

Age at Data Collection Event (years): 1

	VPT/VLBW Group	Control Group
Survived
Invited	456
Assessed	456

2012

2013

2 Year Follow Up

Overview

EPICE participants were followed up at 2 years of age via a postal questionnaire completed by parents. This follow up involved all EPICE regions.

Data were collected on neurodevelopment including the PARCA-R questionnaire (or Ages and stages Questionnaire 24 month version (ASQ 24) in France) supplemented with additional questions on walking, feeding, sight and hearing. Parents also completed a questionnaire on the health of the participant, healthcare resource utilisation, additional help and follow up care received. Height, weight and head circumference were based on the latest measurements recorded by a health professional in the child's health record book. Additionally, details on breastfeeding, living arrangements, family structure, childcare and socioeconomic status and demographic information were collected.

Start Date: 2013
End Date: 2014

Data sources

Questionnaires
Physical measures

Participants

Age at Data Collection Event (years): 2

	VPT/VLBW Group	Control Group
Survived
Invited	408
Assessed	408

EPICE participants were followed up at 2 years of age via a postal questionnaire completed by parents. This follow up involved all EPICE regions.

Data were collected on neurodevelopment ...

2013

2014

3 Year Follow Up

Overview

At 3 years of age, participants from the two Portuguese regions enrolled in the EPICE cohort were followed up.

A structured questionnaire was completed by the parents of the participant via telephone interview. Data was collected on socioeconomic status of the father and mother (e.g. education), living arrangements and childcare, health status, healthcare resource utilisation, follow-up care (vaccines, specialists), height and weight, breastfeeding, food and allergies. In addition, the parents completed a food diary detailing everything the child ate or drank for 3 days.

The parents also completed the Preschool Child Behavior Checklist 1 1/2-5 (CBCL 1 1/2-5-LDS) which was used to assess the social, physical and cognitive development of child, as well as language development and the languages spoken by the child.

Start Date: 2014
End Date: 2015

Data sources

Questionnaires
Cognitive measures
Physical measures

Participants

Age at Data Collection Event (years): 3

	VPT/VLBW Group	Control Group
Survived
Invited	456
Assessed	456

At 3 years of age, participants from the two Portuguese regions enrolled in the EPICE cohort were followed up.

A structured questionnaire was completed by the parents of the participant ...

2014

2015

4 Year Follow Up

Overview

At 4 years of age, participants from the two Portuguese regions enrolled in the EPICE cohort were followed up. The parent/guardian of the participant completed a questionnaire via a telephone interview.

Data were collected on childcare provision, health, healthcare resource utilisation, follow-up care, medication and supplements, height, weight and child development.

Start Date: 2015
End Date: 2016

Data sources

Questionnaires
Physical measures

Participants

Age at Data Collection Event (years): 4

	VPT/VLBW Group	Control Group
Survived
Invited	445
Assessed	445

At 4 years of age, participants from the two Portuguese regions enrolled in the EPICE cohort were followed up. The parent/guardian of the participant completed a questionnaire via a telephone ...

2015

2016

5 Year Follow Up

Overview

The full EPICE cohort was assessed as part of the Screening to Improve Health in Very Preterm Infants in Europe (SHIPS) research project, which builds on EPICE and continues the follow up of the children at 5 years. This follow up involved all EPICE regions.

Parents completed a questionnaire on living arrangements, child care provision, education, parental socioeconomic status, health and disability, healthcare resource utilisation and follow up care, health associated expenditure and financial situation. The Ages and Stages Questionnaire 3 (ASQ-3) 60 months questionnaire was used to assess development of communication and problem solving skills, and the Strengths and Difficulties questionnaire was used to assess behavior and emotional symptoms. Health-Related Quality of Life was assessed using the PedsQL instrument (physical, social, emotional and school problems). Parental mental health was assessed using questions taken from the SF-36 questionnaire.

Neurodevelopmental assessments were carried out via a standardised test battery to examine cognitive and motor development.

Start Date: 2016
End Date: 2019

Data sources

Questionnaires
Cognitive measures

Participants

Age at Data Collection Event (years): 5

	VPT/VLBW Group	Control Group
Survived
Invited	427
Assessed	427

The full EPICE cohort was assessed as part of the Screening to Improve Health in Very Preterm Infants in Europe (SHIPS) research project, which builds on EPICE and continues the follow up of the ...

2016

2019

Individual Study / EPICE-PT

EPICE-PT - Effective Perinatal Intensive Care in Europe

Members

Overview

Access

Study Design

Marker Paper

Timeline

Population

Selection Criteria

Files

Data Collection Events

Files

Variables Classifications

Individual Study / EPICE-PT

EPICE-PT - Effective Perinatal Intensive Care in Europe

Members

Henrique Barros

Julia Doetsch

Overview

Access

Study Design

Marker Paper

Timeline

Population

Selection Criteria

Files

Data Collection Events

Perinatal Assessment

Overview

Participants

1 Year Follow up

Overview

Participants

2 Year Follow Up

Overview

Participants

3 Year Follow Up

Overview

Participants

4 Year Follow Up

Overview

Participants

5 Year Follow Up

Overview

Participants

Files

Variables Classifications