IntroductionThe COVID-19 pandemic posed a significant lifecourse rupture, not least to those who had specific physical vulnerabilities to the virus, but also to those who were suffering with mental ill health. Women and birthing people who were pregnant, experienced a perinatal bereavement, or were in the first post-partum year (i.e., perinatal) were exposed to a number of risk factors for mental ill health, including alterations to the way in which their perinatal care was delivered.MethodsA consensus statement was derived from a cross-disciplinary collaboration of experts, whereby evidence from collaborative work on perinatal mental health during the COVID-19 pandemic was synthesised, and priorities were established as recommendations for research, healthcare practice, and policy.ResultsThe synthesis of research focused on the effect of the COVID-19 pandemic on perinatal health outcomes and care practices led to three immediate recommendations: what to retain, what to reinstate, and what to remove from perinatal mental healthcare provision. Longer-term recommendations for action were also made, categorised as follows: Equity and Relational Healthcare; Parity of Esteem in Mental and Physical Healthcare with an Emphasis on Specialist Perinatal Services; and Horizon Scanning for Perinatal Mental Health Research, Policy, & Practice.DiscussionThe evidence base on the effect of the pandemic on perinatal mental health is growing. This consensus statement synthesises said evidence and makes recommendations for a post-pandemic recovery and re-build of perinatal mental health services and care provision.
BACKGROUND:Domestic violence and abuse (DVA) and mental illness during pregnancy have long-lasting and potentially serious consequences, which may have been exacerbated during the COVID-19 pandemic.AIMS:To investigate how the UK COVID-19 lockdown policy influenced the identification of DVA and depressive symptoms during pregnancy in health services in South-East London in Spring 2020, using eLIXIR (Early-Life Data Cross-Linkage in Research) maternity and mental routine healthcare data.METHOD:We used a regression discontinuity approach, with a quasi-experimental study design, to analyse the effect of the transition into and out of the COVID-19 lockdown on the rates of positive depression screens, DVA recorded in maternity and secondary mental health services, and contact with secondary mental health services during pregnancy.RESULTS:We analysed 26 447 pregnancies from 1 October 2018 to 29 August 2020. The rate of DVA recorded in maternity services was low throughout the period (<0.5%). Within secondary mental health services, rates of DVA dropped by 78% (adjusted odds ratio 0.219, P = 0.012) during lockdown, remaining low after lockdown. The rate of women screening positive for depression increased by 40% (adjusted odds ratio 1.40, P = 0.023), but returned to baseline after lockdown lifted.CONCLUSIONS:Rates of DVA identification in secondary mental health services dropped during and after lockdown, whereas overall rates of DVA identified in maternity services were concerningly low. Healthcare services must adopt guidance to facilitate safe enquiry, particularly in remote consultations. Further research is vital to address the longer-term impact on women's mental health caused by the increase in depression during the lockdown.
Background: It is unclear how best to identify and treat women with mental disorders in pregnancy and the year after birth (i.e. the perinatal period). Objectives: (1) To investigate how best to identify depression at antenatal booking [work package (WP) 1]. (2) To estimate the prevalence of mental disorders in early pregnancy (WP1). (3) To develop and examine the efficacy of a guided self-help intervention for mild to moderate antenatal depression delivered by psychological well-being practitioners (WP1). (4) To examine the psychometric properties of the perinatal VOICE (Views On Inpatient CarE) measure of service satisfaction (WP3). (5) To examine the clinical effectiveness and cost-effectiveness of services for women with acute severe postnatal mental disorders (WPs 1–3). (6) To investigate women’s and partners’/significant others’ experiences of different types of care (WP2). Design: Objectives 1 and 2 – a cross-sectional survey stratified by response to Whooley depression screening questions. Objective 3 – an exploratory randomised controlled trial. Objective 4 – an exploratory factor analysis, including test–retest reliability and validity assessed by association with the Client Satisfaction Questionnaire contemporaneous satisfaction scores. Objective 5 – an observational cohort study using propensity scores for the main analysis and instrumental variable analysis using geographical distance to mother and baby unit. Objective 6 – a qualitative study. Setting: English maternity services and generic and specialist mental health services for pregnant and postnatal women. Participants: Staff and users of mental health and maternity services. Interventions: Guided self-help, mother and baby units and generic care. Main outcome measures: The following measures were evaluated in WP1(i) – specificity, sensitivity, positive predictive value, likelihood ratio, acceptability and population prevalence estimates. The following measures were evaluated in WP1(ii) – participant recruitment rate, attrition and adverse events. The following measure was evaluated in WP2 – experiences of care. The following measures were evaluated in WP3 – psychometric indices for perinatal VOICE and the proportion of participants readmitted to acute care in the year after discharge. Results: WP1(i) – the population prevalence estimate was 11% (95% confidence interval 8% to 14%) for depression and 27% (95% confidence interval 22% to 32%) for any mental disorder in early pregnancy. The diagnostic accuracy of two depression screening questions was as follows: a weighted sensitivity of 0.41, a specificity of 0.95, a positive predictive value of 0.45, a negative predictive value of 0.93 and a likelihood ratio (positive) of 8.2. For the Edinburgh Postnatal Depression Scale, the diagnostic accuracy was as follows: a weighted sensitivity of 0.59, a specificity of 0.94, a positive predictive value of 0.52, a negative predictive value of 0.95 and a likelihood ratio (positive) of 9.8. Most women reported that asking about depression at the antenatal booking appointment was acceptable, although this was reported as being less acceptable for women with mental disorders and/or experiences of abuse. Cost-effectiveness analysis suggested that both the Whooley depression screening questions and the Edinburgh Postnatal Depression Scale were more cost-effective than with the Whooley depression screening questions followed by the Edinburgh Postnatal Depression Scale or no-screen option. WP1(ii) – 53 women with depression in pregnancy were randomised. Twenty-six women received modified guided self-help [with 18 (69%) women attending four or more sessions] and 27 women received usual care. Three women were lost to follow-up (follow-up for primary outcome: 92%). At 14 weeks post randomisation, women receiving guided self-help reported fewer depressive symptoms than women receiving usual care (adjusted effect size −0.64, 95% confidence interval −1.30 to 0.06). Costs and quality-adjusted life-years were similar, resulting in a 50% probability of guided self-help being cost-effective compared with usual care at National Institute for Health and Care Excellence cost per quality-adjusted life-year thresholds. The slow recruitment rate means that a future definitive larger trial is not feasible. WP2 – qualitative findings indicate that women valued clinicians with specialist perinatal expertise across all services, but for some women generic services were able to provide better continuity of care. Involvement of family members and care post discharge from acute services were perceived as poor across services, but there was also ambivalence among some women about increasing family involvement because of a complex range of factors. WP3(i) – for the perinatal VOICE, measures from exploratory factor analysis suggested that two factors gave an adequate fit (comparative fit index = 0.97). Items loading on these two dimensions were (1) those concerning aspects of the service relating to the care of the mother and (2) those relating to care of the baby. The factors were positively correlated (0.49; p < 0.0001). Total scores were strongly associated with service (with higher satisfaction for mother and baby units, 2 degrees of freedom; p < 0.0001) and with the ‘gold standard’ Client Service Questionnaire total score (test–retest intraclass correlation coefficient 0.784, 95% confidence interval 0.643 to 0.924; p < 0.0001). WP3(ii) – 263 of 279 women could be included in the primary analysis, which shows that the odds of being readmitted to acute care was 0.95 times higher for women who were admitted to a mother and baby unit than for those not admitted to a mother and baby unit (0.95, 95% confidence interval 0.86 to 1.04; p = 0.29). Sensitivity analysis using an instrumental variable found a markedly more significant effect of admission to mother and baby units (p < 0.001) than the primary analysis. Mother and baby units were not found to be cost-effective at 1 month post discharge because of the costs of care in a mother and baby unit. Cost-effectiveness advantages may exist if the cost of mother and baby units is offset by savings from reduced readmissions in the longer term. Limitations: Policy and service changes had an impact on recruitment. In observational studies, residual confounding is likely. Conclusions: Services adapted for the perinatal period are highly valued by women and may be more effective than generic services. Mother and baby units have a low probability of being cost-effective in the short term, although this may vary in the longer term. Future work: Future work should include examination of how to reduce relapses, including in after-care following discharge, and how better to involve family members. Trial registration: This trial is registered as ISRCTN83768230 and as study registration UKCRN ID 16403. Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 10, No. 5. See the NIHR Journals Library website for further project information.
Children and young people with Autism Spectrum Disorder (ASD) have an increased risk of comorbidities, such as epilepsy and Attention-Deficit/Hyperactivity Disorder (ADHD). However, little is known about the relationship between early childhood epilepsy (below age 7) and later ADHD diagnosis (at age 7 or above) in ASD. In this historical cohort study, we examined this relationship using an innovative data source, which included linked data from routinely collected acute hospital paediatric records and childhood community and inpatient psychiatric records. In a large sample of children and young people with ASD (N = 3237), we conducted a longitudinal analysis to examine early childhood epilepsy as a risk factor for ADHD diagnosis while adjusting for potential confounders, including socio-demographic characteristics, intellectual disability, family history of epilepsy and associated physical conditions. We found that ASD children and young people diagnosed with early childhood epilepsy had nearly a twofold increase in risk of developing ADHD later in life, an association which persisted after adjusting for potential confounders (adjusted OR = 1.72, CI95% = 1.13-2.62). This study suggests that sensitive monitoring of ADHD symptoms in children with ASD who have a history of childhood epilepsy may be important to promote early detection and treatment. It also highlights how linked electronic health records can be used to examine potential risk factors over time for multimorbidity in neurodevelopmental conditions.
The response to the coronavirus outbreak and how the disease and its societal consequences pose risks to already vulnerable groups such those who are socioeconomically disadvantaged and ethnic minority groups. Researchers and community groups analysed how the COVID-19 crisis has exacerbated persisting vulnerabilities, socio-economic and structural disadvantage and discrimination faced by many communities of social disadvantage and ethnic diversity, and discussed future strategies on how best to engage and involve local groups in research to improve outcomes for childbearing women experiencing mental illness and those living in areas of social disadvantage and ethnic diversity. Discussions centred around: access, engagement and quality of care; racism, discrimination and trust; the need for engagement with community stakeholders; and the impact of wider social and economic inequalities. Addressing biomedical factors alone is not sufficient, and integrative and holistic long-term public health strategies that address societal and structural racism and overall disadvantage in society are urgently needed to improve health disparities and can only be implemented in partnership with local communities.
Introduction The use of linked data and non-consent methodologies is a rapidly growing area of health research due to the increasing detail, availability and scope of routinely collected electronic health records data. However, gaining the necessary legal and governance approvals to undertake data linkage is a complex process in England. Objectives We reflect on our own experience of establishing lawful basis for data linkage through Section 251 approval, with the intention to build a knowledgebase of practical advice for future applicants. Methods Thematic analysis was conducted on a corpus of Section 251 feedback reports from the NHS Health Research Authority Confidentiality Advisory Group. Results Four themes emerged from the feedback. These were: (a) Patient and Public Involvement, (b)~Establishing Rationale, (c) Data maintenance and contingency, and the need to gain (d) Further Permissions from external authorities prior to full approval. Conclusions Securing Section 251 approval poses ethical, practical and governance challenges. However, through a comprehensive, planned approach Section 251 approval is possible, enabling researchers to unlock the potential of linked data for the purposes of health research.
Registers based on electronic health records have substantially enhanced the capabilities of mental health research. These registers can be further supported by linked administrative data, generating evidence with a high level of external validity, reproducibility, and applicability for policy making.1Gilbert R Lafferty R Hagger-Johnson G et al.GUILD: GUidance for Information about Linking Data sets.J Public Health (Oxf). 2018; 40: 191-198Crossref PubMed Scopus (47) Google Scholar This approach has been achieved for a single site through the Clinical Record Interactive Search (CRIS) research platform at the South London and Maudsley National Health Service (NHS) Foundation Trust (SLaM; a large mental health provider serving 1·4 million residents in south London, UK).2Perera G Broadbent M Callard F et al.Cohort profile of the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) case register: current status and recent enhancement of an electronic mental health record-derived data resource.BMJ Open. 2016; 6e008721Crossref PubMed Scopus (238) Google Scholar Since 2008, the CRIS platform at SLaM has supported more than 200 research publications, many of which used linked national administrative data, including the National Pupil Database,3Downs JM Ford T Stewart R et al.An approach to linking education, social care and electronic health records for children and young people in south London: a linkage study of child and adolescent mental health service data.BMJ Open. 2019; 9e024355Crossref PubMed Scopus (30) Google Scholar Hospital Episode Statistics,4Stubbs B Perara G Koyanagi A et al.Risk of hospitalized falls and hip fractures in 22 103 older adults receiving mental health care vs 161 603 controls: a large cohort study.J Am Med Dir Assoc. 2020; (published online April 19.)https://doi.org/10.1016/j.jamda.2020.03.005Summary Full Text Full Text PDF Scopus (6) Google Scholar and the National Cancer Registry.5Chang C-K Hayes RD Broadbent MTM et al.A cohort study on mental disorders, stage of cancer at diagnosis and subsequent survival.BMJ Open. 2014; 4e004295Crossref PubMed Scopus (80) Google Scholar Replication of such linkages at other sites is technically straightforward and would allow valuable opportunities for improving generalisability and cross-testing hypotheses. It is also good policy to provide access to regional level data that local decision makers can use to directly care for their populations, as recognised by the launch of The Lancet Regional Health. In 2018, a Medical Research Council award supported SLaM and King's College London (London, UK) to provide such a programme, assisting other mental health NHS trusts by use of CRIS-like databases with the legal and governance pathways required to replicate pre-existing SLaM-CRIS linkages. However, although successful in its deliverables, this programme was complex and time consuming, and, in our view, ultimately unsustainable nationally without a change in approval processes. In particular, one of the principal obstacles to achieving wider coverage is the current requirement to complete full applications on research ethics and legality for each new data owner (NHS trust), even if the linkage protocols are identical. The implementation of multicentre clinical trials once faced similar challenges, which were resolved by reformed processes of UK ethics and governance that allow new sites to be added with a simple addendum once the main centre receives approval. We propose that this model could be easily extended to data linkage initiatives when a protocol has already been approved and when new sites adopt identical procedures for linking to a common source. This process would reduce the administrative and legal burden for NHS trusts and substantially improve the equality of data provision. Thus, this strategy would address the current situation in which only wealthier trusts aligned with large academic centres can afford the dedicated time and resources required to navigate approval processes (arguably unethical in its own right and perpetuating an impoverished national evidence base). With longstanding, in-depth data from electronic health records accumulating from all mental health services and complementary national resources, the UK has unprecedented opportunities to host innovative mental health research. However, current governance frameworks risk unwittingly perpetuating regional inequalities unless moves are made to facilitate multisite linkage projects. RS reports grants from Janssen, GlaxoSmithKline, and Takeda, outside the submitted work. All other authors declare no competing interests. The views expressed in this Correspondence are those of the authors and are not necessarily those of the National Institute for Health Research or the Department of Health and Social Care.
Purpose Linked maternity, neonatal and maternal mental health records were created to support research into the early life origins of physical and mental health, in mothers and children. The Early Life Cross Linkage in Research (eLIXIR) Partnership was developed in 2018, generating a repository of real-time, pseudonymised, structured data derived from the electronic health record systems of two acute and one Mental Health Care National Health Service (NHS) Provider in South London. We present early descriptive data for the linkage database and the robust data security and governance structures, and describe the intended expansion of the database from its original development. Additionally, we report details of the accompanying eLIXIR Research Tissue Bank of maternal and neonatal blood samples. Participants Descriptive data were generated from the eLIXIR database from 1 October 2018 to 30 June 2019. Over 17 000 electronic patient records were included. Findings to date 10 207 women accessed antenatal care from the 2 NHS maternity services, with 8405 deliveries (8772 infants). This diverse, inner-city maternity service population was born in over 170 countries with an ethnic profile of 46.1% white, 19.1% black, 7.0% Asian, 4.1% mixed and 4.1% other. Of the 10 207 women, 11.6% had a clinical record in mental health services with 3.0% being treated during their pregnancy. This first data extract included 947 infants treated in the neonatal intensive care unit, of whom 19.1% were postnatal transfers from external healthcare providers. Future plans Electronic health records provide potentially transformative information for life course research, integrating physical and mental health disorders and outcomes in routine clinical care. The eLIXIR database will grow by ~14 000 new maternity cases annually, in addition to providing child follow-up data. Additional datasets will supplement the current linkage from other local and national resources, including primary care and hospital inpatient data for mothers and their children.