What are the clinical and educational risk factors for poor academic outcomes in children with Autistic Spectrum Disorder?
Lead Research Organisation:
King's College London
Department Name: Psychological Medicine
Abstract
Approximately 1% of UK school age children have an Autistic Spectrum Disorder (ASD). Children with ASD typically have longstanding difficulties using language, engaging in every day social interactions and having a general, flexible interest in the world around them. ASD is commonly diagnosed in the first years of primary school. The majority of children who receive an ASD diagnosis will go on to have difficulties throughout their school life, often leaving with no qualifications. This puts them at a significant disadvantage as adults and at greater risk for a host of mental and physical health problems. An important objective for UK child mental health specialists, teachers and researchers is to reduce these educational failings for children with ASD whilst at school, to ensure they have better skills and opportunities in later life.
In the UK, specialist Child and Adolescent Mental Health Services (CAMHS) commonly provide ASD assessments and offer treatment. CAMHS services also treat common childhood mental health conditions including anxiety, depression, conduct and hyperactivity disorders. Children without ASD who suffer these disorders often have considerable difficulties achieving their potential at school. Fortunately there are a number of effective mental health treatments including medications that can help non ASD children get back on track. These treatments increase their chances of attending school, not getting into trouble and passing exams.
Children with ASD also suffer from these disorders and at much greater rates (up to 70% in some studies) than typically developing children. ASD combined with other mental health disorders presents as a much more complex condition to manage and may significantly impact educational performance. Currently there is little evidence available to inform clinicians on how best to treat the common co-occurring conditions associated with ASD. Pharmacological treatments, developed primarly in non ASD children, may not have the same effect in improving educational performance for ASD children.
Pharmacological treatments (for example stimulants, anti-depressants and anti-psychotics) are being increasingly used by CAMHS to help manage common co-occurring disorders in children with ASD. At present, little is known which disorders or additional symptoms lead clinicians to prescribe these medications to children with ASD. Also, very few experimental trials are conducted in children with ASD that are adequately designed to measure the long term effect of treatment, therefore their influence on longer term educational outcomes like overall school attendance, exclusion rates or final exam results remains unclear.
With robust confidentiality and data protection measures in place, electronic health records(EHRs) can provide rich data to investigate the gaps in current knowledge. They can be used to determine which childhood factors lead to impaired educational performance in ASD, and how they may be modified by treatment. For this proposal, I will use EHRs via the Clinical Record Interactive Search system(CRIS) and link the records with the National Pupil Database(NPD). CRIS was developed by King College London to allow researchers to retrieve in depth information from the anonymised case notes of over 34,000 CAMHS patients. The NPD is a database managed by the Department for Education and contains all children academic records since enrolment in state school from 2002. As the fellowship applicant, under the supervision of Professor Hotopf and Dr Hayes at Kings College London, and Professor Ford at the University of Exeter, I will study whether additional mental health difficulties impact on educational performance and whether treatments that may reduce these difficulties could improve academic outcomes.
In the UK, specialist Child and Adolescent Mental Health Services (CAMHS) commonly provide ASD assessments and offer treatment. CAMHS services also treat common childhood mental health conditions including anxiety, depression, conduct and hyperactivity disorders. Children without ASD who suffer these disorders often have considerable difficulties achieving their potential at school. Fortunately there are a number of effective mental health treatments including medications that can help non ASD children get back on track. These treatments increase their chances of attending school, not getting into trouble and passing exams.
Children with ASD also suffer from these disorders and at much greater rates (up to 70% in some studies) than typically developing children. ASD combined with other mental health disorders presents as a much more complex condition to manage and may significantly impact educational performance. Currently there is little evidence available to inform clinicians on how best to treat the common co-occurring conditions associated with ASD. Pharmacological treatments, developed primarly in non ASD children, may not have the same effect in improving educational performance for ASD children.
Pharmacological treatments (for example stimulants, anti-depressants and anti-psychotics) are being increasingly used by CAMHS to help manage common co-occurring disorders in children with ASD. At present, little is known which disorders or additional symptoms lead clinicians to prescribe these medications to children with ASD. Also, very few experimental trials are conducted in children with ASD that are adequately designed to measure the long term effect of treatment, therefore their influence on longer term educational outcomes like overall school attendance, exclusion rates or final exam results remains unclear.
With robust confidentiality and data protection measures in place, electronic health records(EHRs) can provide rich data to investigate the gaps in current knowledge. They can be used to determine which childhood factors lead to impaired educational performance in ASD, and how they may be modified by treatment. For this proposal, I will use EHRs via the Clinical Record Interactive Search system(CRIS) and link the records with the National Pupil Database(NPD). CRIS was developed by King College London to allow researchers to retrieve in depth information from the anonymised case notes of over 34,000 CAMHS patients. The NPD is a database managed by the Department for Education and contains all children academic records since enrolment in state school from 2002. As the fellowship applicant, under the supervision of Professor Hotopf and Dr Hayes at Kings College London, and Professor Ford at the University of Exeter, I will study whether additional mental health difficulties impact on educational performance and whether treatments that may reduce these difficulties could improve academic outcomes.
Technical Summary
I will establish cross-sectional and longitudinal individual clinical profiles (e.g. socio-demographic, co-occurring disorders, initial symptom severity, impairment, home, neighbourhood and service use factors) for a large ASD child cohort and model clinical predictors of pharmacotherapy use (drug type, class switches, polypharmacy).
Text mining algorithms and structured fields in CRIS will provide data on a range of baseline clinical factors and pharmacological treatment. I will then explore associations between clinical profiles and academic outcomes in children with ASD, which will include academic attainment, school drop-out, attendance and exclusion rates. I will estimate the risk of these outcomes according to clinical profiles, including co-occurring disorder.
CRIS will be linked with the National Pupil Database, a longitudinal dataset containing educational and census information since 2002, for all children who have been enrolled in state education. This will provide individual level longitudinal education performance data. I will then model the clinical predictors, treatment exposures (drug type, duration of treatment), treatment response exposures ( effect sizes derived from validated psychometric scales and normalised against outcome data provided by CAMHS Outcome Research Consortium) against multiple education outcomes. I will estimate the risk of specific education outcomes according to ASD clinical profiles and co-occurring disorders and whether these risks are modified by medication use and treatment response.
Text mining algorithms and structured fields in CRIS will provide data on a range of baseline clinical factors and pharmacological treatment. I will then explore associations between clinical profiles and academic outcomes in children with ASD, which will include academic attainment, school drop-out, attendance and exclusion rates. I will estimate the risk of these outcomes according to clinical profiles, including co-occurring disorder.
CRIS will be linked with the National Pupil Database, a longitudinal dataset containing educational and census information since 2002, for all children who have been enrolled in state education. This will provide individual level longitudinal education performance data. I will then model the clinical predictors, treatment exposures (drug type, duration of treatment), treatment response exposures ( effect sizes derived from validated psychometric scales and normalised against outcome data provided by CAMHS Outcome Research Consortium) against multiple education outcomes. I will estimate the risk of specific education outcomes according to ASD clinical profiles and co-occurring disorders and whether these risks are modified by medication use and treatment response.
Planned Impact
Key stakeholders in research findings from this fellowship include children and their families, paediatric and mental health clinicians, educational and social providers and the general public. The proposal explores scientific questions relating to clinical characteristics, mental health treatments and educational outcomes for children with ASD. These questions have been substantially shaped by evidence on stakeholder preferences for future research in ASD. Children and families are concerned with real-life outcomes of ASD, and one of the strengths of this proposal is that the research value, design, and implementation of the project has ongoing involvement from an Oversight Committee made up of patients, CAMHS clinicians and researchers. In this fellowship, I will draw on electronic secondary mental health care records linked to educational databases. I will examine the diverse clinical profiles of children with ASD, the treatment they are given and their later educational outcomes.
The findings produced from the fellowship will be included in the IOP BRC Stakeholder Participation Theme which is an ongoing programme set up to publicize our research to staff, children and families who user services in SLAM and neighbouring Trusts. My main findings will be posted on the SLAM Biomedical Research Centre -Mental Health website which is available to and accessible by the public. I will present results through public events hosted by the Institute of Psychiatry at King's College London and other institutions including the University of Exeter ( Exeter's Café Scientifique), UCL Partners, the Royal College of Psychiatry and British Educational Research Association. In addition, the Department of Psychological Medicine, where I will be based, have an established relationship with Science Media Centre which feeds results of scientific research to the UK public via news broadcasting and papers
The proposed fellowship provides a potentially valuable case study demonstrating local and national capacity to provide 'real world' child pharmaceutical data. At present other sources of this data are limited, possibly due to the methodological challenges of pharmaceutical research in children. This information would allow clinicians and families to make more informed decisions based on a clear understanding on prescribing practices and outcomes. Potential dissemination targets in this respect will include policy makers within NIHR for their specific expertise on relevance in this area. Dissemination targets may also include pharmaceutical industry itself, facilitated as with other CRIS work by KCL Business Ltd.
The proposed research is focused on understanding the outcome and treatment processes of children with ASD receiving clinical care, which can directly inform healthcare policy and treatment guidelines. Timescales for this type of impact are likely to be relatively rapid, ideally within 5-10 years of the output. Result summaries will be fed back to relevant organizations such as NICE, and promoted within locally with the aim of directly impacting NHS policy and current patient care. This would be assisted through support of local collaborators with expertise in psychopharmacological research dissemination at KCL. This is a particularly strong domain for KCL clinician scientists, especially through the publication of its influential Maudsley prescribing guidelines. These efforts are carried out in conjunction with the IoP media support unit and the BRC-MH Stakeholder Participation
The Research division within the Department for Education (DfE) have been highly supportive of this proposal and have expressed interest in incorporating findings into their research reports and policy papers. As the fellowship progresses, I plan to become further involved with DfE policy department to discuss dissemination and potential commission of further projects.
The findings produced from the fellowship will be included in the IOP BRC Stakeholder Participation Theme which is an ongoing programme set up to publicize our research to staff, children and families who user services in SLAM and neighbouring Trusts. My main findings will be posted on the SLAM Biomedical Research Centre -Mental Health website which is available to and accessible by the public. I will present results through public events hosted by the Institute of Psychiatry at King's College London and other institutions including the University of Exeter ( Exeter's Café Scientifique), UCL Partners, the Royal College of Psychiatry and British Educational Research Association. In addition, the Department of Psychological Medicine, where I will be based, have an established relationship with Science Media Centre which feeds results of scientific research to the UK public via news broadcasting and papers
The proposed fellowship provides a potentially valuable case study demonstrating local and national capacity to provide 'real world' child pharmaceutical data. At present other sources of this data are limited, possibly due to the methodological challenges of pharmaceutical research in children. This information would allow clinicians and families to make more informed decisions based on a clear understanding on prescribing practices and outcomes. Potential dissemination targets in this respect will include policy makers within NIHR for their specific expertise on relevance in this area. Dissemination targets may also include pharmaceutical industry itself, facilitated as with other CRIS work by KCL Business Ltd.
The proposed research is focused on understanding the outcome and treatment processes of children with ASD receiving clinical care, which can directly inform healthcare policy and treatment guidelines. Timescales for this type of impact are likely to be relatively rapid, ideally within 5-10 years of the output. Result summaries will be fed back to relevant organizations such as NICE, and promoted within locally with the aim of directly impacting NHS policy and current patient care. This would be assisted through support of local collaborators with expertise in psychopharmacological research dissemination at KCL. This is a particularly strong domain for KCL clinician scientists, especially through the publication of its influential Maudsley prescribing guidelines. These efforts are carried out in conjunction with the IoP media support unit and the BRC-MH Stakeholder Participation
The Research division within the Department for Education (DfE) have been highly supportive of this proposal and have expressed interest in incorporating findings into their research reports and policy papers. As the fellowship progresses, I plan to become further involved with DfE policy department to discuss dissemination and potential commission of further projects.
Publications
Kadra G
(2016)
Predictors of long-term (=6months) antipsychotic polypharmacy prescribing in secondary mental healthcare.
in Schizophrenia research
Downs J
(2017)
Linking strategies and biases when matching cohorts to the National Pupil Database. IJPDS (2017) Issue 1, Vol 1:348 Proceedings of the IPDLN Conference (August 2016)
in International Journal of Population Data Science
Downs JM
(2017)
The Association Between Comorbid Autism Spectrum Disorders and Antipsychotic Treatment Failure in Early-Onset Psychosis: A Historical Cohort Study Using Electronic Health Records.
in The Journal of clinical psychiatry
Downs J
(2017)
Linking health and education data to plan and evaluate services for children.
in Archives of disease in childhood
Velupillai S
(2018)
Using clinical Natural Language Processing for health outcomes research: Overview and actionable suggestions for future advances.
in Journal of biomedical informatics
Kesserwani J
(2019)
Risk of readmission in patients with schizophrenia and schizoaffective disorder newly prescribed clozapine
in Journal of Psychopharmacology
Wickersham A
(2019)
The association between depression and later educational attainment in children and adolescents: a systematic review protocol.
in BMJ open
Description | Department of Health & UCL Child Policy Research Unit Response Mode |
Amount | £45,000 (GBP) |
Organisation | Government of Catalonia |
Department | Department of Health |
Sector | Public |
Country | Spain |
Start | 12/2015 |
End | 03/2016 |
Description | Foundation for Professionals in Service for Adolescents grant scheme |
Amount | £4,500 (GBP) |
Organisation | Foundation for Professionals in Service for Adolescents (FPSA) |
Sector | Charity/Non Profit |
Country | United Kingdom |
Start | 09/2015 |
End | 03/2016 |
Description | MQ Data science award |
Amount | £49,996 (GBP) |
Organisation | MQ Mental Health Research |
Sector | Charity/Non Profit |
Country | United Kingdom |
Start | 03/2018 |
End | 09/2019 |
Description | MRC Mental Health Data Pathfinder |
Amount | £1,479,329 (GBP) |
Organisation | Medical Research Council (MRC) |
Sector | Public |
Country | United Kingdom |
Start | 04/2018 |
End | 04/2020 |
Description | NIHR Clinician Scientist Fellowship |
Amount | £1,311,111 (GBP) |
Funding ID | CS-2018-18-ST2-014 |
Organisation | NIHR/HEFCE Higher Education Fund for England |
Sector | Public |
Country | United Kingdom |
Start | 03/2018 |
End | 02/2024 |
Description | Peggy Pollak Fellowship in Neurodevelopmental Psychiatry |
Amount | £206,512 (GBP) |
Organisation | King's College London |
Department | Psychiatry Research Trust |
Sector | Charity/Non Profit |
Country | United Kingdom |
Start | 11/2017 |
End | 10/2020 |
Description | Programme Grants for Applied Research [On-Line Parent Training for the Initial Management of ADHD referral (OPTIMA)] |
Amount | £1,875,976 (GBP) |
Funding ID | RP-PG-0618-20003 |
Organisation | NIHR/HEFCE Higher Education Fund for England |
Sector | Public |
Country | United Kingdom |
Start | 10/2019 |
End | 09/2024 |
Description | nuffield foundation |
Amount | £47,579 (GBP) |
Organisation | Nuffield Foundation |
Sector | Charity/Non Profit |
Country | United Kingdom |
Start | 10/2017 |
End | 12/2018 |
Title | CRIS-National Pupil Database data linkage |
Description | This linked data is the first linked anonymised dataset of NHS electronic health records with routinely collected non-health social and educational services data data in England, and provides a unique resource for investigating the relationship between mental health treatment and educational outcomes. The Confidential Data Linkage Service holds anonymised data from the Department for Education National Pupil Database linked with Child and Adolescent Mental Health Service (CAMHS) anonymised records, as well as an anonymised control sample of all school aged children, who are not patients of the South London & Maudsley NHS Foundation Trust, who were at school and lived in Croydon, Lambeth, Lewisham or Southwark from 2008 to 2013. This linkage will provide evidence to help families; treating clinicians and health policy makers understand the risk factors for childhood mental illnesses such as autism, attention deficit hyperactivity disorders, psychosis, obsessional compulsive disorders and depression. In addition, it will provide evidence to help clinicians and families understand the impact of childhood mental health on educational outcomes. An important objective for families who seek child and adolescent mental health care is to get their child back on track at school and improve their education performance; this linkage will enable research into how educational risks factors impact childhood mental health treatment and outcome. |
Type Of Material | Database/Collection of data |
Provided To Others? | No |
Impact | The dataset was created in July 2015, and there are no published outputs yet. |
URL | http://www.maudsleybrc.nihr.ac.uk/about-us/core-facilities/cris/cris-data-linkages/ |
Description | Collaboration with the UCL Evidence Base Practice Unit, ICH and Anna Freud Centre |
Organisation | University College London |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Working on use of best practice linkage methodologies - using privacy preserving techniques to build a data linkage between population based school age child survey data, routinely collected administrative educational data, and mental health records. Providing a safe-haven for storage of the data. Providing expertise in analysing health and education linked data. |
Collaborator Contribution | Dataset and expertise on analysing the population based survey data. |
Impact | None yet |
Start Year | 2016 |
Description | Mental Health Policy Research Unit |
Organisation | University College London |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | I co-authored the application for the new NIHR mental health policy unit based at UCL and KCL, and now contribute as an ongoing member of the policy unit team. |
Collaborator Contribution | Funding co-applicants, lead by Prof Sonia Johnson. The aim of all members under the policy research unit is to help the Department of Health and others involved in making nationwide plans for mental health services to make decisions based on good evidence. The PRU provides expert views and evidence available to policymakers in a timely way and carry out research that is directly useful for policy. The MHPRU is managed by academics at UCL and KCL in partnership with collaborators from City and Middlesex University. Other partners include the Centre for Mental Health and the Mental Elf. |
Impact | Group with expertise in child and adult mental health, including methodological specialists in statistics, health economics, sociology, implementation science and service user and carer involvement in research. Current focus is on providing evidence for the mental health act review. |
Start Year | 2017 |
Description | SLaM KCL Collaboration with the Department for Education |
Organisation | Department for Education |
Country | United Kingdom |
Sector | Public |
PI Contribution | Providing research expertise to create, and analyse a large linked dataset of NHS routinely collected mental health combined with rountinely submitted educational outcomes |
Collaborator Contribution | Providing linkage expertise and Educational Performance Data |
Impact | A linked data-set has been created from the collaboration, and is now being used for analysis by KCL researchers, with feedback provided to DfE policy teams. It has provided a precedent for data linkage projects between non-health and health public organisations, and now being used as a template for other university-government (UCL Farr institute - Department for Education) data linkage collaborations. |
Start Year | 2014 |
Description | SLaM KCL Collaboration with the Department for Education |
Organisation | King's College London |
Department | Department of Psychological Medicine |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Providing research expertise to create, and analyse a large linked dataset of NHS routinely collected mental health combined with rountinely submitted educational outcomes |
Collaborator Contribution | Providing linkage expertise and Educational Performance Data |
Impact | A linked data-set has been created from the collaboration, and is now being used for analysis by KCL researchers, with feedback provided to DfE policy teams. It has provided a precedent for data linkage projects between non-health and health public organisations, and now being used as a template for other university-government (UCL Farr institute - Department for Education) data linkage collaborations. |
Start Year | 2014 |
Description | UCL Child Policy Research Insitute |
Organisation | University College London |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Providing expertise on health informatics and data resources that can be used for long-term outcome tracking of children with long term mental health conditions |
Collaborator Contribution | Expertise in life course analyses in long-term paediatric conditions using linked data. |
Impact | No outputs yet. |
Start Year | 2018 |
Description | Child and Adolecent Psychiatry Conference (Madrid) |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Symposium with audience participation on Predictors of complex treatment outcomes in Early onset psychosis. International collaboration between clinical academics in Madrid organised - to undertake a replication study using a spanish cohort. |
Year(s) Of Engagement Activity | 2015 |
URL | http://www.escap2015.com/ |
Description | Invited talk : Institute of Health Seminar, Unversity of Exeter |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | Talk to Exeter University Medical school, open to clinical and academic staff and students, to discuss the application of big data methodologies in child mental health care. Providing illustrations from my work conducted under MRC RTF |
Year(s) Of Engagement Activity | 2015 |
URL | http://www.exeter.ac.uk/news/events/details/index.php?event=4698 |
Description | Invited talk on Health and Education data linkages : ADRC-E Bloomsbury, Farr Institute |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | A multi-disciplinary meeting that involved academics and civil servants working cross government departments who are using data linkage methodologies for health orientated risk factor outcome studies |
Year(s) Of Engagement Activity | 2015 |
Description | Invited talk: 10th Imparts seminar series Integrating mental health into physical healthcare across the lifespan |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Professional Practitioners |
Results and Impact | A multi-disciplinary audience of health care practitioners with carers and patients present. I provided an overview of some of the complexities of managing children with ASD on an acute inpatient unit. I provided an overview of my research findings relating to physical health outcomes that commonly affect children with ASD throughout the lifecourse and the treatments commonly used to manage challenging behaviour. I was approached by several student nurses who were interested in the safety of pharmacological approaches used commonly in ASD when I described my pharmaco-epidemiological research of antipsychotic use in ASD. |
Year(s) Of Engagement Activity | 2016 |
URL | https://www.kcl.ac.uk/ioppn/depts/pm/research/imparts/Quick-links/Seminar-Slides/Seminar-10/Seminar-... |
Description | Invited talk: Data Linkage Workshop : ADRC-E Bloomsbury, Farr Institute |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | A multi-disciplinary meeting that involved academics and civil servants working cross government departments who are using data linkage methodologies for health orientated risk factor outcome studies. I was able to describe my MRC funded work that described the first health-non health linkage using routinely collected public service data for research purposes. Technical approaches to the linkage methodology was discussed. |
Year(s) Of Engagement Activity | 2015 |
Description | Presentation at annual research event at Southern health NHS Trust |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | A number of NHS organisations were interested in the application of CRIS-NPD linked data, and we have entered ongoing discussions to support two Trusts to developing similar informatics resources and linked data, to enable further replication work. |
Year(s) Of Engagement Activity | 2018 |
URL | https://www.facultyofclinicalinformatics.org.uk/list-of-faculty-fellows-appointed-in-august-2018/ |
Description | RCPsych Child and Adolescent Faculty : Brighton |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Purpose was to describe my research activity whilst on the MRC RTF, outlining the use of natural language processing and data linkages as novel approaches for examining risks and outcomes for child mental disorders. Provoked a discussion about how to balance research for clinical practice improvement with safeguarding data use to preserve patient privacy. |
Year(s) Of Engagement Activity | 2015 |
URL | http://www.rcpsych.ac.uk/traininpsychiatry/conferencestraining/conferences/cap2015presentations.aspx |
Description | Research guidance for Higher Trainees Psychiatry trainees, using epidemiological approaches to examine school outcomes, London |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | Increased interest in using data linkage methodologies to tackle research questions examining child mental health outcomes |
Year(s) Of Engagement Activity | 2015 |