EPICure 1 19y Health Quest Dataset
Networks
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Variables
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Associated study
- United Kingdom
- Ireland
| Acronym | EPICure |
|---|---|
| Name | EPICure |
| Study design | Cohort |
| Number of very preterm (VPT) and/or very low birthweight (VLBW) births included in cohort (live & still births) | 4004 |
| Countries |
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Population
EPICure Cohort
All extremely preterm births at or before 25 weeks of gestation in all 276 maternity units in the whole of the UK and Ireland from 1st March 1995 to 31st December 1995.
Data Collection Event
19 Year Follow Up
At 19 years of age, participants underwent a clinical examination including anthropometric measurements (height, weight, seated height, head waist and hip circumference), hand grip strength, Modified Incremental Shuttle Walk Test and details of medication. Cardiovascular function was assessed using blood pressure measurements, radial artery waveform analysis and pulse wave velocity, stroke volume and cardiac output measured by NICOM, and ambulatory blood pressure. Respiratory function was assessed using Forced Expiratory NO Analysis and spirometry (pre- and post-bronchodilator). Participants also took part in an overnight sleep study including measurement of respiration during sleep. A neurological examination was performed including classification of cerebral palsy using the Gross Motor Function Classification System (GMFCS) and Manual Ability Classification System (MACS). MRI (3D T1-weighted MPRAGE) was performed to examine white matter, amygdala and thalamic volumes. Ophthalmological assessments were carried out including Best Corrected Visual Acuity (BCVA), anterior segment examinations, dilated posterior segment examinations, assessment of their refractive status, ocular motility and SD OCT imaging. Biosamples were collected for analysis (fasting blood, saliva, urine and sputum collection).
Parents of the participant completed a questionnaire on socioeconomic status (parental employment, education, marital status), the participant's health, effects of participant's health on the family's ability to work, welfare benefits received, parental health and mental health. Parents also completed the Strengths and Difficulties Questionnaire (SDQ) and an adaption of the Behavior Rating Inventory of Executive Function - Adult Version (BRIEF-A) to assess participant behavior, and the Health Utilities Index (HUI) to assess health status.
Participants completed a health questionnaire including health and disability, use of alcohol, tobacco and drugs, the HUI to assess health status, and Edinburgh Handedness Inventory (EHI). Additional questions were asked on eating, education and training, employment, marital status, relationships with partner, family and friends. Participants also completed the Quality of Life Scale (QOLS, Burckhardt & Anderson, 2003), satisfaction with Life Scale (SWLS), Rosenberg Self-Esteem Scale, ASEBA Adult Self-Report (ASR), BRIEF-A, empathy quotient (EQ), Broad Autism Phenotype Questionnaire (BAPQ), Pain Catastrophising Scale (PCS), 11-item Big Five Inventory (BFI-11),Warwick-Edinburgh Mental Well-Being Scale (WEMWBS). ADHD was assessed using a translation of the Bavarian Longitudinal Study (BLS) ADHD questionnaire that was adapted from Kooij et al, 2003 and DuPaul ADHD Rating Scale-IV, 1998.
Full scale IQ was measured using Weschler Abbreviated Scale of Intelligence Second Edition (WASI-II), and participants also completed the Beery-Buktenica Test of Visual Motor Integration, Verbal Fluency Task, Attentional Network Test, Automated Working Memory assessment (AWMA), Digit Span, Test of Word Reading Efficiency (TOWRE), Numerical Representation, Woodcock-Johnson III Test of Achievement (WJIII) Math skills - Math Fluency and Calculation (Mathematics) subtests, Frankfurt Test and Training of Facial Affect Recognition (FEFA-2), and Prospective Memory Test.
Participants underwent a Life course interview, Clinical interview Schedule-Revised (CIS-R) semi-structured interview to assess psychiatric symptoms, and Psychosis-Like Symptoms interview (PLIKS). The assessment team rated the participant's behavior according to the Tester's Rating of Adult Behavior (TRAB), and the participant's communication and language skills using the Experimenter Rating of Speech and Language.
Parents of the participant completed a questionnaire on socioeconomic status (parental employment, education, marital status), the participant's health, effects of participant's health on the family's ability to work, welfare benefits received, parental health and mental health. Parents also completed the Strengths and Difficulties Questionnaire (SDQ) and an adaption of the Behavior Rating Inventory of Executive Function - Adult Version (BRIEF-A) to assess participant behavior, and the Health Utilities Index (HUI) to assess health status.
Participants completed a health questionnaire including health and disability, use of alcohol, tobacco and drugs, the HUI to assess health status, and Edinburgh Handedness Inventory (EHI). Additional questions were asked on eating, education and training, employment, marital status, relationships with partner, family and friends. Participants also completed the Quality of Life Scale (QOLS, Burckhardt & Anderson, 2003), satisfaction with Life Scale (SWLS), Rosenberg Self-Esteem Scale, ASEBA Adult Self-Report (ASR), BRIEF-A, empathy quotient (EQ), Broad Autism Phenotype Questionnaire (BAPQ), Pain Catastrophising Scale (PCS), 11-item Big Five Inventory (BFI-11),Warwick-Edinburgh Mental Well-Being Scale (WEMWBS). ADHD was assessed using a translation of the Bavarian Longitudinal Study (BLS) ADHD questionnaire that was adapted from Kooij et al, 2003 and DuPaul ADHD Rating Scale-IV, 1998.
Full scale IQ was measured using Weschler Abbreviated Scale of Intelligence Second Edition (WASI-II), and participants also completed the Beery-Buktenica Test of Visual Motor Integration, Verbal Fluency Task, Attentional Network Test, Automated Working Memory assessment (AWMA), Digit Span, Test of Word Reading Efficiency (TOWRE), Numerical Representation, Woodcock-Johnson III Test of Achievement (WJIII) Math skills - Math Fluency and Calculation (Mathematics) subtests, Frankfurt Test and Training of Facial Affect Recognition (FEFA-2), and Prospective Memory Test.
Participants underwent a Life course interview, Clinical interview Schedule-Revised (CIS-R) semi-structured interview to assess psychiatric symptoms, and Psychosis-Like Symptoms interview (PLIKS). The assessment team rated the participant's behavior according to the Tester's Rating of Adult Behavior (TRAB), and the participant's communication and language skills using the Experimenter Rating of Speech and Language.