Trends and associations in mental and physical health: the Adult Psychiatric Morbidity Survey

University of Leicester’s legal basis for processing personal data under GDPR is function of a public task (by a public organisation) as set out in Article 6(1), point (e) (“necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller”) and Article 9(2), point (j) (“necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes”).

The Psychiatric Morbidity Survey series provides key context for understanding mental illness in England and for informing initiatives in this area. The survey series has run since the early 1990s and covered a range of general population namely Adults living in private households: aged 16 to 64 in 1993, aged 16 to 74 in 2000, and 16 and over in 2007 and 2014.

The University of Leicester (UOL), Department of Health Sciences, are conducting a quantitative study with the overall aim of identifying the associations between Attention Deficit Hyperactivity Disorder (ADHD) with Autism Spectrum Disorder (ASD) and other psychiatric conditions, in the adult general population and additionally, the association of adult ADHD and ASD with possible risk and protective factors. In addition, the University of Leicester will use this data to validate an ADHD assessment (Schedules for Clinical Assessment in Neuropsychiatry (SCAN) ADHD tool) carried out during phase II of the study, using the Diagnostic Interview for ADHD in adults (DIVA) carried out during phase III of the APMS 2014 study. The study will utilise data from the Adult Psychiatric Morbidity Surveys (2014), a nationally representative survey of mental health, to analyse these associations.

The APMS 2014 data will also be utilised to update and continue an existing programme of studies to examine and understand national prevalence, trends and associations of mental and physical health conditions. This programme will continue an existing collaboration on the previous APMS datasets (1993-2007) with the APMS ‘writing group’, based at the National Centre for Social Research (NatCen). The programme is ongoing and will later incorporate APMS 2021 (the APMS survey is carried out every 7 years), subject to an amended application.

Furthermore, data will be utilised to analyse diabetes in Autistic adults. The study will utilise data from the Adult Psychiatric Morbidity Surveys (2014), a nationally representative survey of mental health, to analyse this association.

Access to the APMS 2014 data is also necessary in order to further develop and evaluate the data for future APMS surveys, with respect to mental health assessments.

Use of data from the 2014 APMS will be purely a secondary analysis of anonymised data with no attempts to link back to the original sample. Data will be used for the purpose of research only.

The University of Leicester will be the sole Data Controller and Processor. No other organisations are involved in the study

Data with individual, non-identifiable records will be downloaded from the Economic and Social Data Service (ESDS) data archive and, kept at the University of Leicester (UOL), on a dedicated project space, on the designated research drive.

A secure VPN will be used to access the dedicated R: drive allocation where the data is held, by named University of Leicester employees, using University of Leicester managed encrypted laptops. This will include some off-campus working via the VPN. No data will be copied from the designated research drive.

Data will only be accessible by approved UOL research staff and will not be transferred to or shared with any other parties.

Names of those accessing the data will be kept by the University's Information Assurance Office to ensure compliance with e-Learning for Healthcare (E-LFh) training. The dataset will be included on the University's Information Assets Register.

Data will be analysed for nationally representative trends and associations using SPSS, SAS, R and STATA. Data analysis will be at an aggregate level, for population based trends in prevalence and statistical associations. Statistics will not be reported for cells numbering less than 30.

Use of data from the 2014 APMS will be purely a secondary analysis of anonymised data with no attempts to link back to the original sample.

Data will not be used for commercial purposes, will not be provided in record-level form to any third party, and will not be used for direct marketing.

December 2023: Validation of an ADHD assessment (Schedules for Clinical Assessment in Neuropsychiatry (SCAN) ADHD tool) carried out during phase II of the study, using the Diagnostic Interview for ADHD in adults (DIVA) carried out during phase III of the APMS 2014 study. Aggregated data will be used.

High profile peer-reviewed academic papers identifying the associations between Attention Deficit Hyperactivity Disorder (ADHD) with Autism Spectrum Disorder (ASD) and other psychiatric conditions, in the adult general population and additionally, the association of adult ADHD and ASD with possible risk and protective factors. (February 2024) Aggregated data will be used.

December 2023: High profile peer-reviewed academic paper identifying diabetes prevalence in people with Autism Spectrum Disorder (ASD). Aggregated data will be used.

December 2023: High profile peer-reviewed academic paper and press release on trends in mental health, for use in health service planning, needs projection and health policy making. Aggregated data will be used.

September 2022-June 2025: Further high-profile peer-reviewed academic papers on trends in mental health conditions and risk factors and their association with context and risk factors. Aggregated data will be used.

June 2022- March 2025: Aggregated data will be used in presentations and/or at conferences to illustrate any trends and/or associations found in mental health conditions.

The outputs listed above will be presented at one or more of the following conferences/meetings:-

• European Psychiatric Association - Congress of the Section of Epidemiology and Social Psychiatry

o This is an international conference attended by public health and mental health specialists, psychiatrists, clinicians and researchers.

• World Psychiatric Association (WPA) – section of Epidemiology and Public Health

o This is an international conference attended by public health and mental health specialists, psychiatrists, clinicians and researchers.

• International Federation of Psychiatric Epidemiology (IFPE)

o This is an international conference attended by public health and mental health specialists, psychiatrists, clinicians and researchers.

• The Royal College of Psychiatry Neurodevelopmental Special interest Group conference meetings (biannual)

o These meetings are attended by psychiatrists, mental health specialists and researchers with a particular interest in Neurodevelopmental disorders.

• Schedules for Clinical Assessment in Neuropsychiatry (SCAN) annual meetings

o These meetings are attended by international public health and mental health specialists, psychiatrists, clinicians and researchers.

• Local clinical presentations

o These are attended my fully trained clinicians and trainees in psychiatry.

• University presentations

o Internal presentations to university members, both students and staff.

In order to protect patient confidentiality in publications resulting from analysis of APMS data users must:

· guarantee that any outputs made available to anyone other than those with whom this agreement is made, will meet required standards, including the guarantee, methods and standards contained in the Code of Practice for Official Statistics (http://www.statisticsauthority.gov.uk/assessment/code-of-practice/index.html) and the ONS Statistical Disclosure Control (https://gss.civilservice.gov.uk/statistics/methodology-2/statistical-disclosure-control/) for tables produced from surveys;

· apply methods and standards specified in the Microdata Handling and Security Guide to Good Practice (http://www.data-archive.ac.uk/media/132701/UKDA171-SS-MicrodataHandling.pdf) for disclosure control for statistical outputs.

The above outputs were initially planned to be achieved between December 2019 and March 2022. However, due to the COVID pandemic and funding, these outputs were not achieved. Therefore, an extension is being requested to achieve these outputs.

Presentations at the conferences mentioned in the previous section will develop growth in clinical understanding in the areas and has the potential to initiate further research and collaboration.

December 2023: Data processing will provide a validation of an ADHD assessment (Schedules for Clinical Assessment in Neuropsychiatry (SCAN) ADHD tool). The outcome of such has the potential to improve care pathways and future assessment of ADHD in APMS surveys.

September 2024: Data processing will also provide new information for policy makers clinicians and the public on the prevalence of specific mental health conditions and risk factors.

June 2024: Data processing will provide new and unique information on trends in mental health, for use in health service planning, needs projection and health policy making.

Data processing will also provide new understanding of trends in health conditions and their association with context and risk factor (June 2024).

Data processing and subsequent outputs will provide growth in clinical understanding of Neurodevelopmental disorders.

Validation of the ADHD assessment (Schedules for Clinical Assessment in Neuropsychiatry (SCAN) ADHD tool) used in the APMS 2014 has been conducted. This work was paused during the COVID-19 pandemic. The write up and publication of this work is still outstanding and needs to be carried out.

Due to the COVID-19 pandemic, all other work has been delayed and therefore no outputs achieved to date.