Overview of adult outcome studies across the world
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Interview with Dieter Wolke, Prof., The University of Warwick, Project Leader
1. Challenges in creating an adult outcome data base
Marina Mendonca, PhD
One the main goals of the RECAP preterm project is to build up a pan-European database of very preterm (VP) cohort studies.
In this session we will address the main challenges of bringing data together from cohort studies world-wide, which have been following up individuals born VP from birth into adulthood. This will be performed by reflecting on the experience of Work Package 9 focused on investigating adult outcomes of VP preterm. More specifically, we will deconstruct the complexity of this task, by examining some essential steps and skills in creating an adult outcome database.
- To describe some features and challenges of complex projects
- To describe essential steps in creating a multi-study database
- To describe essential skills in managing a complex project/multi-study database
2. Bridging the gap: harmonizing the Quality of Life outcomes of adults born very preterm
Sylvia van der Pal, PhD
In this short presentation you will learn more about using Quality of Life as an outcome of very preterm birth in adulthood.
We will discuss why you should use Quality of Life as an outcome measure of preterm birth in adulthood.
Furthermore, the harmonisation of different Quality of Life outcomes measures will be explained in four steps:
1) Explore and review what data is available
2) Catalogue the data you have store
3) Harmonize each different measure
4) Bridge the gap by looking for “bridging cohorts”
- Why use Quality of Life as an outcome measure in adulthood?
- How to harmonize QoL measures
- How to evaluate QoL if measures are different: ‘bridging the gap’
3. Methodological considerations for assessing universal outcomes of VP birth.
Rob Eves, MSc
A big question in performing multi cohort analyses is how should they be best performed. In particular, what statistical approaches are used and what are their relative strengths and weaknesses. In this presentation, the use of individual participant data meta analyses will be examined with a focus on how they are superior to traditional meta analyses.
- To understand what differentiates an individual participant data (IPD) meta-analysis from an aggregate meta-analysis
- To understand the different types of IPD analyses (1 stage and 2 stage)
- To understand why a researcher may choose to use a 1 stage or 2 stage IPD
4. WP9 Social Functioning in Adults born Very Preterm
Yanyan Ni, PhD
It is well described in the literature that VP birth is associated with a wide range of long-term negative consequences, including respiratory, neurological, cognitive, and psychosocial problems. However, what do we know about social functioning or social relationships of adults born VP and why is it important to investigate this topic? This will be our first learning objective. We will then talk about some new findings in relation to this topic from the latest IPD meta-analysis, using data from five European cohorts. We will also compare results from both one-stage and two-stage approaches used in the analysis. This will be our second learning objective. This will be followed by practical implications from key findings, which will be our third learning objective.
- Why is it important to investigate social functioning in adulthood following very preterm birth (VP; <32 weeks of gestation)?
- New findings from an IPD meta-analysis of self-perceived social functioning
- Practical implications
5. RECAP in action: IPD Meta-Analysis of ADHD in Adults Born Preterm
Rachel Robinson, MPH
As participants have now better understood what is meant by performing an IPD meta-analysis, it is time to see one in practice. In this presentation, participants will see the current state of the evidence on ADHD in preterms, consider why an IPD meta-analysis is beneficial and understand the results. The presentation will also touch on combining and IPD meta-analysis with Register Data.
- Findings on:
- ADHD symptoms in adulthood in 1 stage IPD (8 cohorts, 5 countries, 1 385 Preterm vs 1 633 Term)
- ADHD diagnosis in adulthood in population-based register study (36 962 Preterm vs 684 739 Term)
- Understand if the risk of ADHD pertains to all degrees of preterm birth
- The practical implications