Prevalence, clinical characteristics and impact of body dysmorphic disorder in young people

On 1 February 2023, NHS Digital merged with NHS England. NHS England has assumed responsibility for all activities previously undertaken by NHS Digital. The merger was completed by a statute change. Any reference made to NHS Digital within this Data Sharing Agreement is in reference to the merged organisation known as NHS England.

The research team at University College London (UCL) are requesting access to the 2017 Mental Health of Children and Young People (MHCYP) survey dataset for the purpose of examining the prevalence, clinical characteristics, and impact of body dysmorphic disorder (BDD) in young people.

Body dysmorphic disorder (BDD) is characterised by excessive preoccupation with perceived flaws in physical appearance (most commonly facial features), which appear minimal or completely unobservable to others. Sufferers typically engage in a range of compulsive and repetitive behaviours, such as extreme grooming rituals, often in an attempt to conceal or correct their perceived appearance flaws. The disorder has a devastating impact on quality of life, yet remains under-diagnosed, under-researched and poorly understood. There have been no epidemiological studies of BDD in young people, and therefore many fundamental questions remain unanswered. To this end, this project intends to examine the prevalence, clinical correlates and impairment associated with BDD in young people. This information could have direct implications for the detection and diagnosis of BDD and may identify care needs which could assist those designing, commissioning, and delivering Child and Adolescent Mental Health Services (CAMHS). More specifically, the project aims to answer the following questions:

1) What is the prevalence of BDD in young people?

2) How does the prevalence of BDD vary with age and sex?

3) What are the patterns of psychiatric comorbidity associated with BDD?

4) What is the psychosocial impairment associated with BDD?

5) Is BDD associated with service utilisation?

6) What environmental factors are associated with BDD (e.g. family functioning, bullying, social media use)?

In relation to aim 3) above, UCL would like to examine mood-related outcomes, particularly severe irritability in the form of disruptive mood dysregulation disorder (DMDD). This is crucial as severe irritability is a common presentation of youth with body dysmorphic disorder, but also other conditions. At the moment, UCL are lacking a clear understanding of the basic prevalence and distribution of cases of severe irritability in youth, including those with BDD. UCL will estimate the prevalence of DMDD and its core symptoms (of temper outbursts and irritable mood) alongside the frequency of its overlap with BDD and other conditions such as major depressive disorder.

The MHCYP 2017 data are uniquely able to address the aims of this project as this is the only population-based survey to include assessment of BDD in young people, either in the UK or internationally.

The MHCYP 2017 survey included 9,117 children and young people aged 2 to 19 years old, who were recruited from a stratified probability sample taken from GP registers. Parents reported on younger children, with additional self-report questions for those aged 11-16. Young people aged 17 and over completed their own questionnaires.

The survey included the Development and Well-Being Assessment (DAWBA), a validated diagnostic assessment tool. The DAWBA assesses a wide range of psychiatric disorders. Parents and young people (aged 11 upwards) complete a series of questions online. Within each diagnostic category, initial screening items are presented, followed by more detailed questions. If screening items are not endorsed, then the informant can skip to the next diagnostic category. Parent and child responses are aggregated to determine whether a diagnostic threshold is met.

The DAWBA has been used in previous surveys of child and adolescent mental health in the UK (the British Child and Adolescent Mental Health Surveys), but in the MHCYP 2017 survey the DAWBA was extended to include assessment of body dysmorphic disorder (BDD) for the first time. In addition to the DAWBA, the MHCYP 2017 survey included the Strengths and Difficulties Questionnaire (SDQ), which is a validated dimensional measure of mental health difficulties and impacts. Furthermore, data on the socioeconomic circumstances of the family and the child or young person's contact with services was collected.

The data controller and processor will be UCL. Only those who are substantive employees of UCL will be accessing and analysing the data requested within the UCL secure research facility.

The GDPR lawful basis for UCL to process this data is Article 6(1)(e)'processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller'. As per article 8(c) of the Data Protection Act (DPA) 2018, this “includes processing of personal data that is necessary for the exercise of a function conferred on a person by an enactment or rule of law”.

Power is conferred upon the university by the University College London Royal Charter “to provide education and courses of study in the fields of Arts, Laws, Pure Sciences, Medicine and Medical Sciences, Social Sciences and Applied Sciences and in such other fields of learning as may from time to time be decided upon by the College and to encourage research in the said branches of knowledge and learning and to organise, encourage and stimulate postgraduate study in such branches”.

The legal basis for the processing of special category data is GDPR Article 9 (2)(j), for research or statistical purposes. This is further supported by article 10 of the DPA 2018 that states that an exception can be made to the “prohibition on the processing of special categories of personal data” if "the processing meets the requirement in point (b), (h), (i) or (j) of Article 9(2) of the GDPR for authorisation”.

This project falls under this category because body dysmorphic disorder (BDD) is a major public health concern in the United Kingdom yet remains poorly understood.

Patient and Public Involvement (PPI) will be central to the generation of outputs for this project (see also section 5c), particularly public facing outputs such as blogs, podcasts, and leaflets for schools. Such materials will be developed in conjunction with PPI groups, including those linked with the BDD Foundation. The BDD Foundation is the UK's national charity for BDD and plays a key role in raising awareness of the condition and its treatment. The research lead for this study, who is a substantive employee of UCL, is a clinical advisor for the BDD Foundation, and will work closely with their PPI group to identify relevant forums for dissemination of findings (e.g., relevant podcasts), and to ensure appropriate wording in written outputs.

This project does not link to any wider studies or collaborations.

NHS Digital are the data controller for the MHCYP 2017 data survey. The survey is being carried out by NatCen Social Research and the Office for National Statistics who are co-data processors.

The collected data is checked, derived further (if required), minimised and pseudonymised (direct and indirect identifies removed). The pseudonymised data asset is then sent to NHS Digital for information and to the UK Data Service (UKDS) (www.ukdataservice.ac.uk) for storage and further dissemination. Before UKDS are able to release the data to UCL a Data Sharing Agreement (DSA) must be signed with NHS Digital.

The UKDS will securely transfer the entire standard MHCYP 2017 dataset to UCL. It is not possible to obtain individual variables. Personal data such as names, addresses and dates of birth are not included, only the unique serial number used to represent participants. To minimise the risk of re-identification in this pseudonymised dataset, the study team will also follow the “Disclosure control for microdata produced from social surveys” guidance set out by the Government Statistical Service.

UCL will electronically store the data in their 'Data Safe Haven', a secure research storage and processing environment, which has security assured under a Data Security and Protection Toolkit. Analysis will take place within the secure research environment. Only study team members who are substantive employees of UCL will have the authorisation to access the data for the purpose(s) described and will access the storage and processing environment using their individual password. Remote access will occur via multi-factor authentication over an encrypted connection. Only aggregate data (with small number suppression applied) will be exported for the purpose of dissemination of findings. The data will only be used for the purposes described in the agreement.

UCL will hold data as per the Data Sharing Agreement length, after which the data will be securely destroyed according to the Data Sharing Agreement between UCL and NHS Digital, unless an extension is applied for and granted.

Only aggregated outputs will be made available to third parties in peer reviewed publications and open access reports. There will be no requirement or attempt to re-identify individuals.

Data management will be done using a statistical analysis package. All analyses will be conducted using survey weights and controlling for complex survey design where appropriate, and for non-response. Descriptive statistics will initially be used, with stratification by age and gender where appropriate. This will be followed by the use of logistic and linear regression models to examine the association of a range of psychiatric comorbidities with BDD, as well as psychosocial impairment and service utilisation.

This project aims to contribute to a better understanding of the prevalence and impact of body dysmorphic disorder in children and young people. Specific planned outputs are:

- Peer reviewed journal articles of international standing e.g., Journal of Child Psychiatry and Psychology, Journal of the American Academy of Child and Adolescent Psychiatry (Winter 2022).

- Conference presentations to a range of audiences including health and education (Summer-Autumn 2022).

- Blogs and other public facing outputs, including via social media (e.g. the researchers' Twitter accounts; @georginakrebs and @argStringaris). Public facing outputs will target schools, health professionals and the general public. These will be developed in conjunction with PPI groups and partners such as the BDD Foundation, a national charity (Summer-Autumn 2022).

All outputs will involve presentation of aggregate data with small numbers suppressed only, in accordance with the special conditions detailed under this Agreement.

The first outputs for this project are expected within a year of receiving the Mental Health in Children and Young People (MHCYP) 2017 data. The project will hopefully lead to recommendations which may have an impact on the following categories.

1) Impact on young people with BDD.

Outputs from this work may have direct clinical benefits for young people up to the age of 19 years with body dysmorphic disorder (BDD) across the UK. Findings may also be generalisable internationally. Although the prevalence of BDD is currently unknown, existing research indicates that the disorder is likely to affect 1-2% in adolescents, which equates to approximately 80,000 young people in the UK. BDD is grossly under-diagnosed and there are long delays in young people accessing treatment. This project may help to identify the characteristics of BDD in young people, which could help in raising awareness of this condition. In addition, this project aims to identify demographic and clinical correlates of BDD in youth, which could assist in improving detection and diagnosis of the disorder.

2) Impact on clinical services.

Recommendations based on the study may be able to guide professionals in the detection and diagnosis of BDD, thereby aiding early access to effective treatment. Understanding who is most likely to be affected by BDD (i.e., demographic, and clinical correlates) could inform targeted screening of BDD in within Child and Adolescent Mental Health Services. Similarly, those offering mental health support in schools (e.g. Education Mental Health Practitioners, school nurses and counsellors) could benefit from improved knowledge of the extent of service need and also which groups are particularly vulnerable to experiencing BDD. This could in turn improve prevention and early intervention.

3) Impact on commissioning.

A major beneficiary will be those designing and commissioning Child and Adolescent Mental Health Services (CAMHS) in England, as the research could provide evidence of the prevalence of body dysmorphic disorder and associated clinical needs.

4) Impact on policy.

Policy and commissioning could be impacted at a national level, with beneficiaries including the Parliamentary Health and Social Care Select Committee, and the Women and Equalities Select Committee. These have an important role in holding the Government to account on child mental health policy, and have an interest in addressing body image problems as demonstrated by their recent inquiries into this topic (e.g. “Changing the Perfect Picture: an enquiry into body image” published in April 2021). Other relevant national bodies include NHS England, as well as regional specialist mental health and child health commissioning networks. Policy briefings will be widely disseminated across these groups.

5) Impact on society.

As described above, this project may improve the understanding of BDD in young people thereby increasing early detection, diagnosis and treatment of this condition. Previous BDD research has shown that longer duration of illness is associated with poorer treatment response. Therefore, improving diagnosis and treatment of BDD in youth, which is when the disorder usually emerges, is likely to improve long-term outcomes. This is not only important at an individual level, but may also have benefits at a societal level. If left untreated, BDD is a chronic disorder and associated with unemployment and high levels of service utilization in adulthood. Early diagnosis and treatment is likely to reduce the financial impact of BDD.

No yielded benefit has been recognised as the data was only obtained recently.