Can a nation-wide e-cohort of ADHD and ASD in childhood be established using Welsh routinely available datasets?

OBJECTIVES: We investigated the feasibility and validity of establishing a nationwide e-cohort of individuals with a diagnosis of attention deficit hyperactivity disorder (ADHD) and/or autism spectrum disorder (ASD) for future longitudinal research. DESIGN: Individuals with a childhood diagnosis of ADHD/ASD as recorded on routinely available healthcare datasets were compared with matched controls and a sample of directly assessed individuals with ADHD. SETTING: This study used data from the Welsh Secure Anonymised Information Linkage Databank in Wales, UK. Routinely collected data from primary care, emergency department and hospital admissions were linked at person level. PARTICIPANTS: All individuals in Wales, UK born between 1 January 1991 and 31 December 2000. Individuals with a recorded diagnosis of ADHD and/or ASD by age 18 years were identified using International Classification of Diseases, 10th Revision and National Health Service (NHS) READ codes and matched to 3 controls each and 154 individuals with ADHD recruited from an established research study. OUTCOME MEASURES: Recorded service use for anxiety and depression, alcohol and drug use and self-harm including emergency department use in young adulthood (age 16-25 years). RESULTS: 7726 individuals had a recorded diagnosis of ADHD (80% male) and 5001 of ASD (79% male); 1.4% and 0.9% of the population, respectively. Cox's regression analyses showed ADHD was associated with increased risks of anxiety/depression (HR: 2.36, 95% CI: 2.20 to 2.53), self-harm (HR: 5.70, 95% CI: 5.07 to 6.40), alcohol (HR: 3.95, 95% CI: 3.42 to 4.56), drug use (HR: 5.88, 95% CI: 5.08 to 6.80) and emergency department service use (HR: 1.36, 95% CI: 1.31 to 1.41). Those with ASD were at increased risk of anxiety/depression (HR: 2.11, 95% CI: 1.91 to 2.34), self-harm (HR: 2.93, 95% CI: 2.45 to 3.50) and drug use (HR: 2.21, 95% CI: 1.66 to 2.95) but not alcohol use. The ADHD e-cohort were similar to the directly assessed cohort. CONCLUSIONS: Our identification strategy demonstrated the feasibility of establishing a large e-cohort of those with ADHD/ASD with expected patterns of poorer early adult outcomes, demonstrating a valid method of identifying large samples for future longitudinal studies without selective attrition.

Self-harm, in-person bullying and cyberbullying in secondary school-aged children: A data linkage study in Wales.

INTRODUCTION: Although the evidence base on bullying victimization and self-harm in young people has been growing, most studies were cross-sectional, relied on self-reported non-validated measures of self-harm, and did not separate effects of in-person and cyberbullying. This study aimed to assess associations of self-harm following in-person bullying at school and cyberbullying victimization controlling for covariates. METHODS: School survey data from 11 to 16 years pupils collected in 2017 from 39 Welsh secondary schools were linked to routinely collected data. Inverse probability weighting was performed to circumvent selection bias. Survival analyses for recurrent events were conducted to evaluate relative risks (adjusted hazard ratios [AHR]) of self-harm among bullying groups within 2 years following survey completion. RESULTS: A total of 35.0% (weighted N = 6813) of pupils reported being bullied, with 18.1%, 6.4% and 10.5% being victims of in-person bullying at school only, cyberbullying only and both in-person bullying at school and cyberbullying respectively. Adjusting for covariates, effect sizes for self-harm were significant after being in-person bullied at school only (AHR = 2.2 [1.1-4.3]) and being both in-person bullied at school and cyberbullied (AHR = 2.2 [1.0-4.7]) but not being cyberbullied only (AHR = 1.2 [0.4-3.3]). Feeling lonely during recent summer holidays was also a robust predictor (AHR = 2.2 [1.2-4.0]). CONCLUSIONS: We reaffirm the role of in-person bullying victimization on self-harm. Pupils were twice as likely to self-harm following in-person bullying as their nonvictimised peers. Interventions for young people that minimize the potential impacts of bullying on self-harm should also include strategies to prevent loneliness.

Suicide numbers during the first 9-15 months of the COVID-19 pandemic compared with pre-existing trends: An interrupted time series analysis in 33 countries.

Background: Predicted increases in suicide were not generally observed in the early months of the COVID-19 pandemic. However, the picture may be changing and patterns might vary across demographic groups. We aimed to provide a timely, granular picture of the pandemic's impact on suicides globally. Methods: We identified suicide data from official public-sector sources for countries/areas-within-countries, searching websites and academic literature and contacting data custodians and authors as necessary. We sent our first data request on 22nd June 2021 and stopped collecting data on 31st October 2021. We used interrupted time series (ITS) analyses to model the association between the pandemic's emergence and total suicides and suicides by sex-, age- and sex-by-age in each country/area-within-country. We compared the observed and expected numbers of suicides in the pandemic's first nine and first 10-15 months and used meta-regression to explore sources of variation. Findings: We sourced data from 33 countries (24 high-income, six upper-middle-income, three lower-middle-income; 25 with whole-country data, 12 with data for area(s)-within-the-country, four with both). There was no evidence of greater-than-expected numbers of suicides in the majority of countries/areas-within-countries in any analysis; more commonly, there was evidence of lower-than-expected numbers. Certain sex, age and sex-by-age groups stood out as potentially concerning, but these were not consistent across countries/areas-within-countries. In the meta-regression, different patterns were not explained by countries' COVID-19 mortality rate, stringency of public health response, economic support level, or presence of a national suicide prevention strategy. Nor were they explained by countries' income level, although the meta-regression only included data from high-income and upper-middle-income countries, and there were suggestions from the ITS analyses that lower-middle-income countries fared less well. Interpretation: Although there are some countries/areas-within-countries where overall suicide numbers and numbers for certain sex- and age-based groups are greater-than-expected, these countries/areas-within-countries are in the minority. Any upward movement in suicide numbers in any place or group is concerning, and we need to remain alert to and respond to changes as the pandemic and its mental health and economic consequences continue. Funding: None.

Engagement of individuals aged 14-25 years with a digital mental health service during the COVID-19 pandemic in the UK: a cohort study of service usage data.

BACKGROUND: Public use of digital mental health technologies has informed several studies focusing on patterns of engagement within user-led digital support systems. General engagement with these services has increased since the start of the COVID-19 pandemic. However, to the best of our knowledge, this is the first study to explore how user engagement patterns with these platforms changed during the pandemic. METHODS: In this cohort study, we included individuals aged 14-25 years who signed up to the online mental health platform Kooth in the UK before the pandemic (May 1, 2019 to March 10, 2020) and during the pandemic (March 11, 2020 to Oct 31, 2021). Routinely collected usage data were assessed for consenting users who returned to Kooth at least once after sign-up. We used logistic regression to compare service component usage and overall engagement across cohorts. FINDINGS: 5048 individuals (mean sign-ups per day 9·0 [12·0]) were included in the pre-pandemic cohort and 13 841 (mean sign-ups per day 11·5 [13·9]) in the pandemic cohort, representing a significant increase in sign-ups per day during the pandemic compared with the pre-pandemic period (Welch's t-test p=0·0001). Compared with users pre-pandemic, users during the pandemic were less likely to have a drop-in chat with a practitioner (odds ratio [OR] 0·50 [95% CI 0·47-0·54], p<0·0001) but were more likely to journal (1·92 [1·77-2·07], p<0·0001) and comment on existing content (1·10 [1·03-1·18], p=0·008). Users who signed up to Kooth during the pandemic and requested a chat with a practitioner (7816 [56·5%] of 13 841 users) were also less likely to receive a chat than users who requested a chat pre-pandemic (3791 [75·1%] of 5048 users; OR 0·68 [0·63-0·74], p<0·0001). INTERPRETATION: During the COVID-19 pandemic, people with the ability and resources to access digital mental health support were diverted from face-to-face services to digital mental health services. This change might have resulted in an unmet need for drop-in practitioner chats, with users probably resorting to asynchronous support through community interaction or journaling. FUNDING: Kooth Digital Health.

Sources of potential bias when combining routine data linkage and a national survey of secondary school-aged children: a record linkage study.

BACKGROUND: Linking survey data to administrative records requires informed participant consent. When linkage includes child data, this includes parental and child consent. Little is known of the potential impacts of introducing consent to data linkage on response rates and biases in school-based surveys. This paper assessed: i) the impact on overall parental consent rates and sample representativeness when consent for linkage was introduced and ii) the quality of identifiable data provided to facilitate linkage. METHODS: Including an option for data linkage was piloted in a sub-sample of schools participating in the Student Health and Wellbeing survey, a national survey of adolescents in Wales, UK. Schools agreeing to participate were randomized 2:1 to receive versus not receive the data linkage question. Survey responses from consenting students were anonymised and linked to routine datasets (e.g. general practice, inpatient, and outpatient records). Parental withdrawal rates were calculated for linkage and non-linkage samples. Multilevel logistic regression models were used to compare characteristics between: i) consenters and non-consenters; ii) successfully and unsuccessfully linked students; and iii) the linked cohort and peers within the general population, with additional comparisons of mental health diagnoses and health service contacts. RESULTS: The sub-sample comprised 64 eligible schools (out of 193), with data linkage piloted in 39. Parental consent was comparable across linkage and non-linkage schools. 48.7% (n = 9232) of students consented to data linkage. Modelling showed these students were more likely to be younger, more affluent, have higher positive mental wellbeing, and report fewer risk-related behaviours compared to non-consenters. Overall, 69.8% of consenting students were successfully linked, with higher rates of success among younger students. The linked cohort had lower rates of mental health diagnoses (5.8% vs. 8.8%) and specialist contacts (5.2% vs. 7.7%) than general population peers. CONCLUSIONS: Introducing data linkage within a national survey of adolescents had no impact on study completion rates. However, students consenting to data linkage, and those successfully linked, differed from non-consenting students on several key characteristics, raising questions concerning the representativeness of linked cohorts. Further research is needed to better understand decision-making processes around providing consent to data linkage in adolescent populations.