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

Smoking, alcohol consumption, and drug use among adolescents with psychiatric disorders compared with a population based sample

AbstractThis study investigated frequencies of smoking, alcohol use, and illicit drug use by diagnostic category in 566 adolescent psychiatric patients, comparing this sample with 8173 adolescents from the general population in Norway who completed the Young-HUNT 3 survey. Frequencies of current alcohol use were high in both samples but were lower among psychiatric patients. Compared with adolescents in the general population, adolescents in the clinical sample had a higher prevalence of current smoking and over four times higher odds of having tried illicit drugs. In the clinical sample, those with mood disorders reported the highest frequencies of smoking, alcohol use, and illicit drug use, whereas those with autism spectrum disorders reported the lowest frequencies. Our results show an increased prevalence of risky health behaviors among adolescents with psychiatric disorders compared with the general population. The awareness of disorder-specific patterns of smoking and substance use may guide preventive measures

Wake-up stroke and unknown-onset stroke; occurrence and characteristics from the nationwide Norwegian Stroke Register

Introduction: Population-based knowledge of the characteristics of wake-up stroke and unknown-onset stroke is limited. We compared occurrence and characteristics of ischaemic and haemorrhagic wake-up stroke, unknown-onset stroke and known-onset stroke in a nationwide register-based study. Patients and methods: We included patients registered in the Norwegian Stroke Register from 2012 through 2019. Age, sex, risk factors, clinical characteristics, acute stroke treatment and discharge destination were compared according to stroke type and time of onset. Results: Of the 60,320 patients included, 11,451 (19%) had wake-up stroke, 11,098 (18.4%) had unknown time of onset and 37,771 (62.6%) had known symptom onset. The proportion of haemorrhagic stroke was lower among wakeup stroke patients (1107/11,451, 9.7%, 95% CI: 9.1–10.2) than for known-onset stroke (5230/37,771, 13.8%, 95% CI: 13.5–14.2) and for unknown-onset stroke (1850/11,098, 16.7%, 95% CI: 16.0–17.4). Mild stroke (NIHSS Discussion and conclusions: Ischaemic wake-up strokes shared baseline characteristics with known-onset strokes, but tended to be milder. Ischaemic unknown-onset stroke patients differed significantly from wake-up stroke, emphasising the importance of considering them as separate entities

Factors Associated with Enhanced Gross Motor Progress in children with Cerebral Palsy : A Register-based Study

Author's accepted version (post-print).This is an Accepted Manuscript of an article published by Taylor & Francis in Physical & Occupational Therapy In Pediatrics on 01/05/2018, available online: http://www.tandfonline.com/10.1080/01942638.2018.1462288.Available from 02/05/2019.acceptedVersio

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

Funding Information: We would like to acknowledge Evert-Ben van Veen from the MLC Foundation, Dagelijkse Groenmarkt 2, 2513 AL Den Haag, the Netherlands. The results on the country-specific text on the Netherlands was based on his contribution. Publisher Copyright: © 2021 Doetsch JN et al.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.Peer reviewe

Psychiatric problems and quality of life in a clinical sample of adolescents: The role of peer relations

Background: The quality of peer relations is linked to mental health in childhood and adolescence, but few studies have investigated its clinical relevance. In particular, the potential mediating role of peer functioning in the associations between different dimensions of symptoms and quality of life (QoL) has not been sufficiently examined. Objective: In a clinical sample of adolescents, we examined peer relations in light of psychiatric diagnoses, as well as QoL and symptoms of mental health problems, with particular focus on symptoms of anxiety, depression, and ADHD. We also examined the potential mediating role of peer problems in the relationship between such symptoms and QoL. Methods: The sample consisted of 603 adolescents (ages 13-18) referred to clinical assessment. Psychiatric diagnoses according to the criteria of the International Statistical Classification of Diseases and Related Health Problems, 10th revision, were collected from participants’ clinical charts. Symptoms of disorders, QoL, and quality of peer relations were measured by self-report questionnaires. Results: Adolescents diagnosed with anxiety/depressive disorder reported more peer problems and lower QoL than adolescents with attention deficit/hyperactivity disorder. These findings were supported with symptom ratings. A path model with bootstrapping was used to assess the potential mediating role of peer problems in the association between symptoms and QoL, showing that peer problems partly mediated the relationship between emotional symptoms and QoL, but not the relationship between ADHD-symptoms and QoL. Conclusion: Improvement of peer relations may be a fruitful path for enhancing QoL among adolescents with symptoms of anxiety and depression

Autism spectrum disorders in extremely preterm children

Objectives To investigate the prevalence, correlates, and antecedents of autism spectrum disorders (ASD) in extremely preterm children. Study design We conducted a prospective study of all births <26 weeks gestation in the United Kingdom and Ireland in 1995. Of 307 survivors at 11 years, 219 (71%) were assessed and compared with 153 term-born classmates. Parents completed the Social Communication Questionnaire (SCQ) to assess autism spectrum symptoms, and ASD were diagnosed by using a psychiatric evaluation. An IQ test and clinical evaluation were also administered. Longitudinal outcome data were available for extremely preterm children. Results Extremely preterm children had significantly higher SCQ scores than classmates (mean difference, 4.6 points; 95% CI, 3.4-5.8). Sixteen extremely preterm children (8%) were assigned an ASD diagnosis, compared with none of the classmates. By hospital discharge, male sex, lower gestation, vaginal breech delivery, abnormal cerebral ultrasound scanning results, and not having had breast milk were independently associated with autism spectrum symptoms. By 6 years, independent associates were cognitive impairment, inattention and peer problems, withdrawn behavior at 2.5 years, and not having had breast milk. Conclusions Extremely preterm children are at increased risk for autism spectrum symptoms and ASD in middle childhood. These symptoms and disorders were associated with neurocognitive outcomes, suggesting that ASD may result from abnormal brain development in this population

Self-reported cognitive and psychiatric symptoms at 3 months predict single-item measures of fatigue and daytime sleep 12 months after ischemic stroke

Introduction: Post-stroke fatigue and increased need for daytime sleep are multidimensional and insufficiently understood sequelae. Our aim was to study the relationships of self-reported cognitive and psychiatric symptoms at 3 months with fatigue and daytime sleep at 12 months post-stroke. Methods: Ischemic stroke patients without reported history of dementia or depression completed postal surveys 3- and 12-months post-stroke. At 3 months, psychiatric symptoms were assessed with the Hospital Anxiety and Depression Scale (HADS), and self-reported changes in cognitive symptoms (concentration and memory) compared to pre-stroke were assessed using single-item measures. At 12 months, single-item questions about changes in self-reported difficulties sleeping at night, fatigue and daytime sleep were included. First, we studied whether self-reported cognitive and/or psychiatric symptoms at 3 months were associated with daytime sleep and fatigue at 12 months using multiple logistic regression. Second, we fitted 2 structural equation models (SEMs) predicting fatigue and 2 models predicting daytime sleep. We compared a model where only age, sex, stroke severity (National Institutes of Health Stroke Scale; NIHSS), and difficulties sleeping at night predicted fatigue and daytime sleep at 12 months to a model where mental distress (i.e., a latent variable built of cognitive and psychiatric symptoms) was included as an additional predictor of fatigue and daytime sleep at 12 months. Results: Of 156 patients (NIHSS within 24 hours after admission (mean ± SD) = 3.6 ± 4.3, age = 73.0 ± 10.8, 41% female) 37.9% reported increased daytime sleep and 50.0% fatigue at 12 months. Increased psychiatric symptoms and worsened cognitive symptoms were associated with fatigue and daytime sleep at 12 months, after controlling for NIHSS, age, sex, and difficulties sleeping at night. SEM models including mental distress as predictor showed adequate model fit across 3 fit measures (highest RMSEA = 0.063, lowest CFI and TLI, both 0.975). Models without mental distress were not supported. Conclusion: Self-reported cognitive and psychiatric symptoms at 3 months predict increased daytime sleep and fatigue at 12 months. This highlights the relevance of monitoring cognitive and psychiatric symptoms in the subacute phase post-stroke. However, future research using validated measures of self-reported symptoms are needed to further explore these relationships.publishedVersio