Physical activity and cognitive function in adults born very preterm or with very low birth weight-an individual participant data meta-analysis.

OBJECTIVE: Individuals born very preterm (<32 weeks of gestation) or with very low birthweight (<1500g) have lower cognitive function compared with term-born peers. Furthermore, some studies suggest that they are less physically active as young adults than controls, but the relationship between physical activity and cognitive function remains unclear. We performed an individual participant data meta-analysis to examine whether being born preterm/with very low birth weight is associated with physical activity in adulthood and examined if cognitive function mediates this association. STUDY DESIGN: Cohorts with data on physical activity and cognitive function in adults born very preterm/very low birth weight and term-born controls were recruited from the Research on European Children and Adults Born Preterm, and the Adults Born Preterm International Collaboration Consortia. A systematic literature search was performed in PubMed and Embase. RESULTS: Five cohorts with 1644 participants aged 22-28 years (595 very preterm/very low birth weight and 1049 controls) were included. Adults born very preterm/very low birth weight reported 1.11 (95% CI: 0.68 to 1.54) hours less moderate to vigorous physical activity per week than controls, adjusted for cohort, age and sex. The difference between individuals born very preterm/very low birth weight and controls was larger among women than among men. Neither intelligence quotient nor self-reported executive function mediated the association between very preterm/very low birth weight and moderate to vigorous physical activity. Results were essentially the same when we excluded individuals with neurosensory impairments. CONCLUSION: Adults born very preterm/very low birth weight, especially women, reported less moderate to vigorous physical activity than their term-born peers. Cognitive function did not mediate this association. Considering the risk of adverse health outcomes among individuals born preterm, physical activity could be a target for intervention.

Self-reported mental health difficulties were of limited use when screening for psychiatric diagnoses in adults born small for gestational age at term.

AIM: Being born small for gestational age (SGA) at term increases the risk of adverse health outcomes. We examined whether self-reported mental health differed between adults born SGA and non-SGA at term and could be used to screen for psychiatric diagnoses. METHODS: We used the Strengths and Difficulties Questionnaire to gather data from 68 participants born SGA and 88 non-SGA controls at a mean age of 26.5 years. Group differences were analysed by linear regression. We calculated the area under the curve and the sensitivity, specificity and predictive values for psychiatric diagnoses. RESULTS: The mean total difficulties score was 1.9 (95% confidence interval 0.4-3.5) points higher for participants born SGA. They also reported more internalising and emotional problems (p < 0.05). The areas under the curve were 0.82 and 0.68 in the SGA and control groups, respectively. Among participants born SGA, the 90th percentile cut-off had a sensitivity of 0.38, a specificity of 0.93 and positive and negative predictive values of 0.75 and 0.71. The 80th percentile cut-off had higher sensitivity and lower specificity. CONCLUSION: Adults born SGA reported more mental health difficulties than non-SGA controls. The low sensitivity using the 90th percentile cut-off suggests that a lower cut-off should be considered.

Visual outcomes and their association with grey and white matter microstructure in adults born preterm with very low birth weight.

Individuals born with very low birth weight (VLBW; < 1500 g) have a higher risk of reduced visual function and brain alterations. In a longitudinal cohort study, we assessed differences in visual outcomes and diffusion metrics from diffusion tensor imaging (DTI) at 3 tesla in the visual white matter pathway and primary visual cortex at age 26 in VLBW adults versus controls and explored whether DTI metrics at 26 years was associated with visual outcomes at 32 years. Thirty-three VLBW adults and 50 term-born controls was included in the study. Visual outcomes included best corrected visual acuity, contrast sensitivity, P100 latency, and retinal nerve fibre layer thickness. Mean diffusivity, axial diffusivity, radial diffusivity, and fractional anisotropy was extracted from seven regions of interest in the visual pathway: splenium, genu, and body of corpus callosum, optic radiations, lateral geniculate nucleus, inferior-fronto occipital fasciculus, and primary visual cortex. On average the VLBW group had lower contrast sensitivity, a thicker retinal nerve fibre layer and higher axial diffusivity and radial diffusivity in genu of corpus callosum and higher radial diffusivity in optic radiations than the control group. Higher fractional anisotropy in corpus callosum areas were associated with better visual function in the VLBW group but not the control group.

Mental health, pain and tiredness in adults born very preterm or with very low birthweight.

AIM: Adults born preterm have increased risk of mental health problems and other neurodevelopmental conditions. We aimed to investigate associations of mental health with pain and tiredness in adults born very preterm (VP; <32 weeks) or very low birthweight (VLBW; <1500 g) and at term, and whether these associations are influenced by physical activity. METHODS: As part of an EU Horizon 2020 project, individual participant data from six prospective cohort studies were harmonised for 617 VP/VLBW and 1122 term-born participants. Mental health was assessed by the Achenbach System of Empirically Based Assessment Adult Self-Report. Pain and tiredness were harmonised based on specific items from self-reported questionnaires. Associations between mental health and pain or tiredness were explored by linear regression. RESULTS: An increase in the mental health scales internalising, externalising and total problems was associated with increased pain and tiredness in the preterm and term group alike. Results were maintained when adjusting for physical activity. CONCLUSION: The findings indicate that associations between mental health, pain and tiredness in adults are independent of gestation or birthweight. Future research should explore other potential mechanisms that may underlie the increased risk of mental health problems in the preterm population.

Body composition in adults born preterm with very low birth weight.

BACKGROUND: Studies on body composition in preterm very low birth weight (VLBW < 1500 g) survivors are inconsistent and trajectories later in life unknown. We assessed body composition and its change from young to mid-adulthood in VLBW adults. METHODS: We studied 137 VLBW adults and 158 term-born controls from two birth cohorts in Finland and Norway at mean age 36 years. Body composition was assessed by 8-polar bioelectrical impedance. We compared results with dual-energy x-ray absorptiometry measurements at 24 years. RESULTS: In mid-adulthood, VLBW women and men were shorter than controls. Fat percentage (mean difference in women 1.1%; 95% CI, -1.5% to 3.5%, men 0.8%; -2.0% to 3.6%) and BMI were similar. VLBW women had 2.9 (0.9 to 4.8) kg and VLBW men 5.3 (2.7 to 8.1) kg lower lean body mass than controls, mostly attributable to shorter height. Between young and mid-adulthood, both groups gained fat and lean body mass (p for interaction VLBW x age>0.3). CONCLUSION: Compared with term-born controls, VLBW adults had similar body fat percentage but lower lean body mass, largely explained by their shorter height. This could contribute to lower insulin sensitivity and muscular fitness previously found in VLBW survivors and predispose to functional limitations with increasing age. IMPACT: In mid-adulthood, individuals born preterm with very low birth weight had similar body fat percentage but lower lean body mass than those born at term. This was largely explained by their shorter height. First study to report longitudinal assessments of body size and composition from young to mid-adulthood in very low birth weight adults. Lower lean body mass in very low birth weight adults could contribute to lower insulin sensitivity and muscular fitness and lead to earlier functional limitations with increasing age.

Atypical brain structure mediates reduced IQ in young adults born preterm with very low birth weight.

Preterm birth with very low birth weight (VLBW) confers heightened risk for perinatal brain injury and long-term cognitive deficits, including a reduction in IQ of up to one standard deviation. Persisting gray and white matter aberrations have been documented well into adolescence and adulthood in preterm born individuals. What has not been documented so far is a plausible causal link between reductions in cortical surface area or subcortical brain structure volumes, and the observed reduction in IQ. The NTNU Low Birth Weight in a Lifetime Perspective study is a prospective longitudinal cohort study, including a preterm born VLBW group (birthweight ≤1500 g) and a term born control group. Structural magnetic resonance imaging data were obtained from 38 participants aged 19, born preterm with VLBW, and 59 term-born peers. The FreeSurfer software suite was used to obtain measures of cortical thickness, cortical surface area, and subcortical brain structure volumes. Cognitive ability was estimated using the Wechsler Adult Intelligence Scale, 3rd Edition, including four IQ-indices: Verbal comprehension, Working memory, Perceptual organization, and Processing speed. Statistical mediation analyses were employed to test for indirect effects of preterm birth with VLBW on IQ, mediated by atypical brain structure. The mediation analyses revealed negative effects of preterm birth with VLBW on IQ that were partially mediated by reduced surface area in multiple regions of frontal, temporal, parietal and insular cortex, and by reductions in several subcortical brain structure volumes. The analyses did not yield sufficient evidence of mediation effects of cortical thickness on IQ. This is, to our knowledge, the first time a plausible causal relationship has been established between regional cortical area reductions, as well as reductions in specific subcortical and cerebellar structures, and general cognitive ability in preterm born survivors with VLBW.

Health-Related Quality-of-Life Outcomes of Very Preterm or Very Low Birth Weight Adults: Evidence From an Individual Participant Data Meta-Analysis.

BACKGROUND AND OBJECTIVE: Assessment of health-related quality of life for individuals born very preterm and/or low birthweight (VP/VLBW) offers valuable complementary information alongside biomedical assessments. However, the impact of VP/VLBW status on health-related quality of life in adulthood is inconclusive. The objective of this study was to examine associations between VP/VLBW status and preference-based health-related quality-of-life outcomes in early adulthood. METHODS: Individual participant data were obtained from five prospective cohorts of individuals born VP/VLBW and controls contributing to the 'Research on European Children and Adults Born Preterm' Consortium. The combined dataset included over 2100 adult VP/VLBW survivors with an age range of 18-29 years. The main exposure was defined as birth before 32 weeks' gestation (VP) and/or birth weight below 1500 g (VLBW). Outcome measures included multi-attribute utility scores generated by the Health Utilities Index Mark 3 and the Short Form 6D. Data were analysed using generalised linear mixed models in a one-step approach using fixed-effects and random-effects models. RESULTS: VP/VLBW status was associated with a significant difference in the Health Utilities Index Mark 3 multi-attribute utility score of - 0.06 (95% confidence interval - 0.08, - 0.04) in comparison to birth at term or at normal birthweight; this was not replicated for the Short Form 6D. Impacted functional domains included vision, ambulation, dexterity and cognition. VP/VLBW status was not associated with poorer emotional or social functioning, or increased pain. CONCLUSIONS: VP/VLBW status is associated with lower overall health-related quality of life in early adulthood, particularly in terms of physical and cognitive functioning. Further studies that estimate the effects of VP/VLBW status on health-related quality-of-life outcomes in mid and late adulthood are needed.

ADHD symptoms and diagnosis in adult preterms: systematic review, IPD meta-analysis, and register-linkage study.

BACKGROUND: This study examined differences in ADHD symptoms and diagnosis between preterm and term-born adults (≥18 years), and tested if ADHD is related to gestational age, birth weight, multiple births, or neonatal complications in preterm borns. METHODS: (1) A systematic review compared ADHD symptom self-reports and diagnosis between preterm and term-born adults published in PubMed, Web of Science, and PROQUEST until April 2021; (2) a one-stage Individual Participant Data(IPD) meta-analysis (n = 1385 preterm, n = 1633 term; born 1978-1995) examined differences in self-reported ADHD symptoms[age 18-36 years]; and (3) a population-based register-linkage study of all live births in Finland (01/01/1987-31/12/1998; n = 37538 preterm, n = 691,616 term) examined ADHD diagnosis risk in adulthood (≥18 years) until 31/12/2016. RESULTS: Systematic review results were conflicting. In the IPD meta-analysis, ADHD symptoms levels were similar across groups (mean z-score difference 0.00;95% confidence interval [95% CI] -0.07, 0.07). Whereas in the register-linkage study, adults born preterm had a higher relative risk (RR) for ADHD diagnosis compared to term controls (RR = 1.26, 95% CI 1.12, 1.41, p < 0.001). Among preterms, as gestation length (RR = 0.93, 95% CI 0.89, 0.97, p < 0.001) and SD birth weight z-score (RR = 0.88, 95% CI 0.80, 0.97, p < 0.001) increased, ADHD risk decreased. CONCLUSIONS: While preterm adults may not report higher levels of ADHD symptoms, their risk of ADHD diagnosis in adulthood is higher. IMPACT: Preterm-born adults do not self-report higher levels of ADHD symptoms, yet are more likely to receive an ADHD diagnosis in adulthood compared to term-borns. Previous evidence has consisted of limited sample sizes of adults and used different methods with inconsistent findings. This study assessed adult self-reported symptoms across 8 harmonized cohorts and contrasted the findings with diagnosed ADHD in a population-based register-linkage study. Preterm-born adults may not self-report increased ADHD symptoms. However, they have a higher risk of ADHD diagnosis, warranting preventive strategies and interventions to reduce the presentation of more severe ADHD symptomatology in adulthood.

Mental health in adults born preterm with very low birth weight at 14 and 26 years of age assessed by the Strengths and Difficulties Questionnaire.

AIM: Very low birth weight (VLBW: <1500 g) is associated with risk of adverse long-term outcomes, including mental health problems. We assessed whether self-reported mental health differed between young adults born preterm with VLBW and term-born controls. We also examined changes in mental health from 14 to 26 years. METHODS: In a prospective cohort study, 61 VLBW and 88 control participants completed the Strengths and Difficulties Questionnaire at 26 years. Group differences were analysed by linear regression with adjustment for sex and parental socioeconomic status. Longitudinal changes from 14 to 26 years were analysed using linear mixed model. RESULTS: Mean total difficulties score was 1.9 (95% CI: 0.5 to 3.5) higher in the VLBW than in the control group. Internalising and its subscale emotional problems as well as externalising and its subscale hyperactivity/inattention symptoms were higher in the VLBW group. From 14 to 26 years, changes in emotional symptoms, peer relationship problems, externalising problems, hyperactivity/inattention, and prosocial behaviour differed between the groups. CONCLUSION: At 26 years, VLBW participants had more self-reported mental health difficulties than controls. Emotional symptoms increased from 14 to 26 years in the VLBW group, whereas hyperactivity and inattention did not decrease with age as it did in the control group.

Outcomes and predictors of functioning, mental health, and health-related quality of life in adults born with very low birth weight: a prospective longitudinal cohort study.

BACKGROUND: Very low birth weight (VLBW: ≤1500 g) is associated with multiple short and long-term complications. This study aimed to examine outcomes and predictors of functioning, mental health, and health-related quality of life in adults born with VLBW. METHODS: In this prospective longitudinal cohort study, 67 VLBW and 102 control participants were assessed using the Adult Self-Report of the Achenbach System of Empirically Based Assessment and Global Assessment of Functioning at 26 years, and the Hospital Anxiety and Depression Scale and Short Form-36 at 28 years of age. Associations between perinatal and childhood predictors and adult functioning were assessed using linear regression. RESULTS: Compared with controls, the VLBW group had lower mean raw scores on the Function and Symptom subscales of the Global Assessment of Functioning at 26 years, a higher sum score of symptoms of anxiety and depression due to more depressive symptoms, and poorer mental health-related quality of life at 28 years. The mean group differences ranged from 0.42 to 0.99 SD. Within the VLBW group, lower birth weight and gestational age, a higher number of days with respiratory support and poorer motor function at 14 years were associated with a higher sum score of symptoms of anxiety and depression at 28 years. Days with respiratory support and motor function at 14 years were also predictive of Global Assessment of Functioning scores at 26 years, and mental health-related quality of life at 28 years. Poorer motor and cognitive function at five years were associated with poorer physical health-related quality of life at 28 years. Parental socioeconomic status was related to mental and physical health-related quality of life. CONCLUSION: In this study, VLBW adults reported poorer functioning and mental health-related quality of life, and more depressive symptoms than their term born peers. Days with respiratory support and adolescent motor function predicted most of the adult outcomes. This study explicates perinatal and developmental markers during childhood and adolescence which can be target points for interventions.

Multidisciplinary and neuroimaging findings in preterm born very low birthweight individuals from birth to 28 years of age: A systematic review of a Norwegian prospective cohort study.

BACKGROUND: Children born preterm with very low birthweight (VLBW) face long-lasting neurodevelopmental challenges, where multidisciplinary assessments are warranted. The International Classification of Functioning, Disability and Health (ICF) provides a framework for understanding and conceptualising these outcomes. OBJECTIVES: We aimed to review clinical and neuroimaging findings from birth to adulthood in a Norwegian cohort of individuals born preterm with VLBW (gestational age <37 weeks, birthweight ≤1500 g) within the framework of ICF. DATA SOURCES: We searched PubMed and Embase for articles reporting results of the Norwegian University of Science and Technology (NTNU) Low Birth Weight in a Lifetime Perspective study. STUDY SELECTION AND DATA EXTRACTION: We included original articles reporting proportions of adverse outcomes, mean group differences, risk factors or associations between outcomes. Data were extracted according to ICF's two-level classification. Body functions and structures comprised outcomes of brain structures, cognition, mental health, vision, pain and physical health. Activities and participation comprised motor skills, general and social functioning, education, employment, and health-related quality of life. SYNTHESIS: We performed a qualitative synthesis of included articles. Where mean (SD) was reported, we calculated group differences in SD units. RESULTS: Fifty-eight publications were included. Within body functions and structures, increased prevalence of brain structure pathology, lower cognitive performance, mental health problems, visual and physical health impairments through childhood, adolescence and young adulthood were reported among preterm VLBW participants compared with controls. Within activities and participation, motor problems, lower general and social functioning, and lower academic attainment were found. Perinatal factors were associated with several outcomes, and longitudinal findings suggested persistent consequences of being born preterm with VLBW. CONCLUSIONS: Being born preterm with VLBW has long-term influences on body functions and structures, activities and participation. The ICF is appropriate for assessing general domains of functioning and guiding the management of individuals born preterm with VLBW.

Increased interaction and procedural flexibility favoured participation: Study across European cohorts of preterm born individuals.

OBJECTIVE: To understand participation and attrition phenomena variability in European cohorts of individuals born preterm through in-depth exploration of the interplay of situational elements involved. METHODS: Multi-situated qualitative design, using focus groups, semi-structured interviews and collaborative visual methodology with a purposive sample of adults born preterm, parents and professionals (n = 124) from eight cohorts in seven European countries. RESULTS: Most cohort participants were motivated by altruism/solidarity and gratitude/sense of duty to reciprocate (only absent in adults aged 19 - 21), followed by expectation of direct benefit to one's health and knowledge amongst participating adults. Common deterrents were perceived failure in reciprocity as in insufficient/inadequate interaction and information sharing, and postal questionnaires. Combining multipurpose, flexible strategies for contact and assessment, reminders, face-to-face and shorter periodicity and not simply adding retention strategies or financial incentives favoured participation. Professionals' main challenges entailed resources, funding and, European societal changes related to communication and geopolitical environment. CONCLUSION: Retention would benefit from tailoring inclusive strategies throughout the cohorts' life cycle and consistent promotion of reciprocal altruistic research goals. Investing in regular interaction, flexibility in procedures, participant involvement and return of results can help mitigate attrition as well as considering mothers as main facilitators to participating children and impaired adults.

Neurocognitive function and associations with mental health in adults born preterm with very low birthweight or small for gestational age at term.

Objectives: To assess neurocognitive function in adults born with low birthweight compared with controls and to explore associations between neurocognitive function and psychopathology in these groups. Methods: In this prospective cohort study, one group born preterm with very low birthweight (VLBW: birthweight <1,500 g, n = 53), one group born small for gestational age at term (SGA: birthweight <10th percentile, n = 63) and one term-born control group (birthweight ≥10th percentile, n = 81) were assessed with neurocognitive tests, diagnostic interviews, and self-report questionnaires at 26 years of age. Results: The VLBW group scored significantly below the control group on several neurocognitive measures, including IQ measures, psychomotor speed, verbal fluency, aspects of visual learning and memory, attention, social cognition, working memory and fine motor speed. The SGA group consistently scored at an intermediate level between the VLBW and the control group and had significantly lower scores than controls on Performance IQ and psychomotor speed, including switching. In the VLBW group, associations were found between lower spatial working memory and the presence of anxiety disorders, internalizing and attention problems, and autistic traits. Furthermore, lower Full scale IQ was associated with attention problems when adjusting for sex and parental socioeconomic status. Conclusion: Adults born preterm with VLBW or born term SGA displayed neurocognitive difficulties. Spatial working memory was associated with difficulties with attention, anxiety, and social function of VLBW adults. The finding and its clinical applicability should be further explored.

Social Functioning in Adults Born Very Preterm: Individual Participant Meta-analysis.

CONTEXT: There is a lack of research on individual perceptions of social experiences and social relationships among very preterm (VP) adults compared with term-born peers. OBJECTIVE: To investigate self-perceived social functioning in adults born VP (<32 weeks' gestation) and/or with very low birth weight (VLBW) (<1500g) compared with term-born adults (≥37 weeks' gestation) using an individual participant data (IPD) meta-analysis. DATA SOURCES: Two international consortia: Research on European Children and Adults born Preterm and Adults Born Preterm International Collaboration. STUDY SELECTION: Cohorts with outcomes assessed by using the Adult Self-Report Adaptive Functioning scales (friends, spouse/partner, family, job, and education) in both groups. DATA EXTRACTION: IPD from 5 eligible cohorts were collected. Raw-sum scores for each scale were standardized as z scores by using mean and SD of controls for each cohort. Pooled effect size was measured by difference (Δ) in means between groups. RESULTS: One-stage analyses (1285 participants) revealed significantly lower scores for relationships with friends in VP/VLBW adults compared with controls (Δ -0.37, 95% confidence interval [CI]: -0.61 to -0.13). Differences were similar after adjusting for sex, age, and socioeconomic status (Δ -0.39, 95% CI: -0.63 to -0.15) and after excluding participants with neurosensory impairment (Δ -0.34, 95% CI: -0.61 to -0.07). No significant differences were found in other domains. LIMITATIONS: Generalizability of research findings to VP survivors born in recent decades. CONCLUSIONS: VP/VLBW adults scored their relationship with friends lower but perceived their family and partner relationships, as well as work and educational experiences, as comparable to those of controls.

Association of Very Preterm Birth or Very Low Birth Weight With Intelligence in Adulthood: An Individual Participant Data Meta-analysis.

Importance: Birth before 32 weeks' gestation (very preterm [VPT]) and birth weight below 1500 g (very low birth weight [VLBW]) have been associated with lower cognitive performance in childhood. However, there are few investigations of the association of neonatal morbidities and maternal educational levels with the adult cognitive performance of individuals born VPT or VLBW (VPT/VLBW). Objective: To assess differences in adult IQ between VPT/VLBW and term-born individuals and to examine the association of adult IQ with cohort factors, neonatal morbidities, and maternal educational level among VPT/VLBW participants. Data Sources: Systematic review of published data from PubMed and meta-analysis of individual participant data (IPD) of cohorts from 2 consortia (Research on European Children and Adults Born Preterm [RECAP] and Adults Born Preterm International Collaboration [APIC]). Study Selection: The meta-analysis included prospective longitudinal cohort studies that assessed the full-scale IQ of adults born VPT or VLBW and respective control groups comprising term-born adults. Data Extraction and Synthesis: The study followed the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) reporting guideline for analyses of individual participant data and identified 8 studies that provided data from 2135 adults (1068 VPT/VLBW and 1067 term-born participants) born between 1978 and 1995. Meta-analyses of IPD were performed using a 1-stage approach, treating VPT birth or VLBW and cohort as random effects. Main Outcomes and Measures: Full-scale IQ scores were converted to z scores within each cohort using the combined SD of VPT/VLBW participants and a control group of term-born participants, with scores centered on the mean of the control group. Results: A total of 426 records were identified and screened. After exclusions, 13 studies were included in the aggregate meta-analysis. The IPD meta-analysis included 8 of the 9 RECAP and APIC cohorts with adult IQ data. The mean (SD) age among the 8 IPD cohorts was 24.6 (4.3) years, and 1163 participants (54.5%) were women. In unadjusted analyses, VPT/VLBW participants had mean adult IQ scores that were 0.78 SD (95% CI, -0.90 to -0.66 SD) lower than term-born participants, equivalent to a difference of 12 IQ points. Among VPT/VLBW participants, lower gestational age (score difference per week of gestation, 0.11; 95% CI, 0.07-0.14), lower birth weight z scores (score difference per 1.0 SD, 0.21; 95% CI, 0.14-0.28), the presence of neonatal bronchopulmonary dysplasia (score difference, -0.16; 95% CI, -0.30 to -0.02) or any grade of intraventricular hemorrhage (score difference, -0.19; 95% CI, -0.33 to -0.05), and lower maternal educational level (score difference, 0.26; 95% CI, 0.17-0.35) were all significantly associated with lower IQ scores in adulthood. Conclusions and Relevance: In this IPD meta-analysis, lower gestational age, lower weight for gestational age, neonatal morbidities, and lower maternal educational levels were all important risk factors associated with lower IQ among young adults born VPT or VLBW.

Record linkage of population-based cohort data from minors with national register data: a scoping review and comparative legal analysis of four European countries.

Background: The GDPR was implemented to build an overarching framework for personal data protection across the EU/EEA. Linkage of data directly collected from cohort participants, potentially serving as a prominent tool for health research, must respect data protection rules and privacy rights. Our objective was to investigate law possibilities of linking cohort data of minors with routinely collected education and health data comparing EU/EEA member states. Methods: A legal comparative analysis and scoping review was conducted of openly accessible published laws and regulations in EUR-Lex and national law databases on GDPR's implementation in Portugal, Finland, Norway, and the Netherlands and its connected national regulations purposing record linkage for health research that have been implemented up until April 30, 2021. Results: The GDPR does not ensure total uniformity in data protection legislation across member states offering flexibility for national legislation. Exceptions to process personal data, e.g., public interest and scientific research, must be laid down in EU/EEA or national law. Differences in national interpretation caused obstacles in cross-national research and record linkage: Portugal requires written consent and ethical approval; Finland allows linkage mostly without consent through the national Social and Health Data Permit Authority; Norway when based on regional ethics committee's approval and adequate information technology safeguarding confidentiality; the Netherlands mainly bases linkage on the opt-out system and Data Protection Impact Assessment. Conclusions: Though the GDPR is the most important legal framework, national legislation execution matters most when linking cohort data with routinely collected health and education data. As national interpretation varies, legal intervention balancing individual right to informational self-determination and public good is gravely needed for health research. More harmonization across EU/EEA could be helpful but should not be detrimental in those member states which already opened a leeway for registries and research for the public good without explicit consent.

Common Core Assessments in follow-up studies of adults born preterm-Recommendation of the Adults Born Preterm International Collaboration.

BACKGROUND: Of all newborns, 1%-2% are born very preterm (VP; <32 weeks) or with very low birthweight (VLBW; ≤1500 g). Advances in prenatal and neonatal care have substantially improved their survival, and the first generations who have benefited from these advances are now entering middle age. While most lead healthy lives, on average these adults are characterised by a number of adversities. These include cardiometabolic risk factors, airway obstruction, less physical activity, poorer visual function, lower cognitive performance, and a behavioural phenotype that includes inattention and internalising and socially withdrawn behaviour that may affect life chances and quality of life. Outcomes in later adulthood are largely unknown, and identifying trajectories of risk or resilience is essential in developing targeted interventions. Joint analyses of data and maintenance of follow-up of cohorts entering adulthood are essential. Such analyses are ongoing within the Adults Born Preterm International Collaboration (APIC; www.apic-preterm.org). Joint analyses require data harmonisation, highlighting the importance of consistent assessment methodologies. OBJECTIVE: To present an expert recommendation on Common Core Assessments to be used in follow-up assessments of adults born preterm. METHODS: Principles of Common Core Assessments were discussed at APIC meetings. Experts for each specific outcome domain wrote the first draft on assessments pertaining to that outcome. These drafts were combined and reviewed by all authors. Consensus was reached by discussion at APIC meetings. RESULTS: We present a recommendation by APIC experts on consistent measures to be used in adult follow-up assessments. CONCLUSIONS: The recommendation encompasses both "core" measures which we recommend to use in all assessments of adults born preterm that include the particular outcome. This will allow comparability between time and location. The recommendation also lists optional measures, focusing on current gaps in knowledge. It includes sections on study design, cardiometabolic and related biomarkers, biological samples, life style, respiratory, ophthalmic, cognitive, mental health, personality, quality of life, sociodemographics, social relationships, and reproduction.

Is there an association between full IQ score and mental health problems in young adults? A study with a convenience sample.

BACKGROUND: Intelligence is the aggregate or global capacity of the individual to act purposefully, to think rationally and to deal effectively with the environment. Previous studies have shown that individuals with intellectual disability, IQ < 70, have increased risk of being diagnosed with one or more mental disorders. We wanted to investigate if this also applies to individuals with IQ between 70 and 85. METHODS: In this study, data was abstracted from a longitudinal follow-up study of individuals with low birth weight and a control group. In the present study, mental health of participants with borderline IQ, defined as a full IQ score 70-84, were compared with mental health of a reference group with full IQ scores ≥85. Mental health at age 19 was assessed using the Schedule for Affective Disorder and Schizophrenia for School-age Children Present and Lifetime (K-SADS P/L) whereby scores meeting the diagnostic criteria for a mental disorder were defined as having mental health problems. In addition the participants completed the ADHD-rating scale and the Autism Spectrum Quotient form (AQ). Logistic regression analyses were used to calculate odds ratio (OR) with 95% confidence intervals (CI) for high scores on the K-SADS. RESULTS: Thirty participants with borderline IQ and 146 controls were included. Sixteen (53%) of the participants with borderline IQ met the diagnostic criteria on the K-SADS for any diagnosis compared with 18 (12%) in the reference group (OR: 6.2; CI: 2.6-14.9). In particular the participants with borderline IQ had excess risk of ADHD and anxiety. These associations were slightly attenuated when adjusted for birth weight and parents' socioeconomic status. CONCLUSIONS: 53% of the participants with borderline IQ had increased risk for a research assessed psychiatric diagnosis compared to about one in ten in the reference group. The group with borderline IQ also had higher total scores and higher scores on some sub-scores included in the Autism Spectrum Quotient form. Our results points towards an increased vulnerability for mental illness in individuals with borderline low IQ. TRIAL REGISTRATION: The main study is recorded by the Regional Committee for Health Research Ethics in Mid-Norway (as project number 4.2005.2605).

Psychiatric symptoms and risk factors in adults born preterm with very low birthweight or born small for gestational age at term.

BACKGROUND: We aimed to examine psychiatric symptoms in adults born preterm with very low birthweight or born at term small for gestational age compared with normal birthweight peers, and examine associations with perinatal factors and childhood motor and cognitive function. METHODS: In this longitudinal cohort study, one preterm born group with very low birthweight (VLBW: birthweight ≤1500 g), one term-born Small for Gestational Age (SGA: birthweight <10th percentile) group and one term-born non-SGA control group, were assessed at 26 years of age. Primary outcomes were scores on self-reported questionnaires: Achenbach System of Empirically Based Assessment - Adult Self-Report, The Autism-Spectrum Quotient and Peters et al. Delusions Inventory. Exposure variables were perinatal data, while childhood motor and cognitive function were examined as possible early markers. RESULTS: Both the preterm VLBW and the term SGA group reported higher levels of attention, internalizing and externalizing problems compared to the control group. In addition, the VLBW participants reported more critical items and a higher proportion had intermediate level autistic traits, while the SGA participants reported more intrusive behavior. Increasing length of respiratory support and hospital stay in the neonatal period, and motor problems in early adolescence, were associated with adult psychiatric symptoms in the VLBW group. CONCLUSIONS: Psychiatric symptoms were frequent in the preterm VLBW group and also in the term-born SGA group. Those who were sickest as babies were most at risk. Motor problems can possibly serve as an early marker of adult psychiatric symptoms in low birthweight individuals.