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Quality of life impact of Brain in Hand
Results of an independent clinical study

  • NHS England logo
  • SBRI Healthcare logo
  • NHS Cornwall Partnership logo
  • South West Academic Health Science Network logo
  • YHEC logo

Why is this independent research important?

Reach

There are more than 700,000 autistic people in the UK. The number of people seeking a clinical autism assessment is increasing.

Anxiety

Every autistic person has their own unique experiences and needs. Many experience day-to-day chronic anxiety which can impact significantly on their mental health.

Inequalities

Autistic people experience some of the greatest inequalities in the UK. They have poor quality of life outcomes.

Support

The NHS is looking at different ways to improve quality of life for autistic people. Digital tools can improve support but there has been a lack of evidence for effectiveness.

What are the statistics on health inequalities?

1

Autistic people are up to 3 times more likely to experience mental health anxiety issues versus the general population1

2

66% of autistic adults have contemplated suicide

With 35% having reported a suicide attempt.2,3,4 They are at significant risk of self-harm

3

75% of autistic people report difficulties in accessing health care5

4

88% of autistic people felt health professionals failed to understand their health needs5

5

£32 Billion cost of failing to support autistic people in the United Kingdom6

These costs are expected to rise

Support

If any themes in this study affect you please click here for support.

What did the researchers want to find out in this study?

  1. To identify the impact of Brain in Hand on quality of life
  2. To examine the impact of Brain in Hand on mental health
  3. To discover how digital tools and 24/7 support impact on people’s ability to manage difficult events and internal experiences
  4. To discover if Brain in Hand could improve a person’s self-awareness
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How were autistic people involved in the study design?

It is important to build partnerships that give people a say in the research we do. Co-production was at the heart of the study design.

1

Research design was joint-led by an autistic person.

2

The research design was created together with autistic people.

3

Communication with study participants was continually adapted to ensure safety, trust and understanding.

4

The study participants led the pace and style of communication and were offered choices for communication.

How was the study run?

99 autistic people were given Brain in Hand. They were assessed at the start of the study and then re-assessed 12 weeks later. 66 people completed the 12 week follow up.

How did researchers find people to take part?

35% via direct contact (phone/letter) from autism assessment waiting lists

65% via social media advertising on Facebook

Why did some people drop out?

It is expected that people will drop out during a clinical study. The drop-out rate for Brain in Hand was lower than expected for an autistic cohort. People who dropped out of this study had lower levels of anxiety at the start of the study. They were aged over 30, and were less likely to live in a property that they or their families owned.

How were the study questions evaluated?

  • To measure anxiety and depression we used a scale called – The Hospital Anxiety and Depression Scale
  • To measure quality of life we used a scale called – The Health of the Nations Outcome Scales for people with Learning Disabilities (HoNOS-LD)8.
  • Ten percent of people who completed the follow-up were randomly selected to take part in interviews.

Why were these scales used?

The HoNOS—LD scale aims to measure change in a person’s health over two or more points in time. Whilst it is not specifically designed for autistic people it is a clinically validated scale that measures changes in therapeutic outcomes.

The HADS is NICE (National Institute for Health and Care Excellence) recommended. It is a valid and reliable self-report measure that is widely used for detecting anxiety and depressive disorders in community settings, as well as being suitable for autistic adults.

Where did the study take place?

Map showing where the study took place

The study found that Brain In Hand

Significantly improved quality of life (p<0.001)

Significantly decreased anxiety (p<0.001)

Significantly reduced self injurious behaviour (p<0.001)

What does significant mean to researchers?

Statistical significance is a way to check if differences between data (i.e. our findings) are a result of chance or if they are meaningful differences. Researchers use p value to determine statistical significance. p<0.001 indicates a statistically significant finding which means these findings are very unlikely to have occurred by chance.

The one-to-one interviews mirrored these findings

Reduced Anxiety

Improved Confidence

Improved Awareness and Understanding Emotions

Supported Users in Lockdown

Brain in Hand significantly impacted the following areas (p<0.001)

Graph key
Graph showing results for self-injurious behaviour, Memory and orientation, and Communication problems in understanding
Graph showing results for problems with eating and drinking, Problems with relationships, and Occupation and activities

Individual HoNOS-LD Component Scores

Brain in Hand meets the minimum needed evidence of research effectiveness for Tier C of NICE Standard Evidence Framework for Health Digital Technologies.

- Professor Rohit Shankar MBE FRCPsych (Chief Investigator)

What is NICE Tier C?

The NICE evidence standards framework (ESF) describes the evidence standards for digital health technologies to demonstrate their value. Tier C is currently the highest evidence standard for digital technologies.

What recommendations were made for improving Brain in Hand?

Participants in the study recommended a number of improvements to the tool. Below is progress on these improvements.

  • Develop a bank of strategies in order to learn from other autistic people 100% Complete
  • Improve the onboarding process, tailoring the sessions and reducing duration 50% Complete
  • Improve the ability to update, add and sync content between app and web app 50% Complete
  • Provide more opportunity to track emotions within the mood monitor 25% Complete
  • Improve planning tool editing functionality and longer time views Being Scoped
  • Improve the calendar feature to sync with other apps and digital tools Being Scoped
  • Develop opportunities for peer support Not Currently Planned

To thank participants Brain in Hand is offering a free lifetime licence for those who would like to continue using the system.

References

  1. Lai MC, Kassee C, Besney R, Bonato S, Hull L, Mandy W et al. Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis. The lancet. psychiatry,2019, 6(10), 819–829. https://doi.org/10.1016/S2215- 0366(19)30289-5.
  2. Blanchard A, Chihuri S, Diguiseppi CG, Li G. Risk of self-harm in children and adults with autism spectrum disorder: A systematic review and meta-analysis. Jama netw open. 2021, 4 (10): e2130272. doi:10.1001/jamanetworkopen.2021.30272.
  3. Cassidy S, Au-Yeung S, Robertson A, Cogger-Ward H, Richards G, Allison C et al. Autism and autistic traits in those who died by suicide in England. British journal of psychiatry. 2022. https://doi.org/10.1192/bjp.2022.21.
  4. Richard G, Kenny R, Griffiths S, Creese B, Aarsland D, Charlton et al. Autistic traits in adults who have attempted suicide. Molecular Autism 2019: 10, 26. https://doi.org/10.1186/s13229-019-0274-4.
  5. The Westminster Commission on Autism (2016) A spectrum of obstacles: an inquiry into access to healthcare for autistic people, https://westminsterautismcommission.files.wordpress.com/2016/03/ar1011_ncg-autismreport- july2016.pdf
  6. Valentina Lemmi, Martin Knapp, et al. (2017) LSE Autism Dividend: Reaping the Rewards of Better Investment. https://www.lse.ac.uk/ News/Latest-news-from-LSE/2017/01- January-2017/32-billion-cost-of-autism
  7. Zigmond A, Snaith R. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983: 67:361– 370. doi: 10.1111/j.1600-0447.1983.tb09716.x. https://pubmed.ncbi.nlm.nih.gov/6880820
  8. Roy A, Matthews H, Clifford P, Fowler V, Martin DM. Health of the Nation Outcome Scales for People with Learning Disabilities (HoNOS-LD). Br J Psychiatry. 2002 Jan:180:61-6. doi: 10.1192/bjp.180.1.61. PMID: 11772853.
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