Psychological and Quality of Life Impact of Brain in Hand
Condition: Autism
Study type: Observational

Summary: 
      A prospective cohort mixed study using both qualitative and quantitative elements. The
      quantitative component will involve tracking outcomes at baseline and at twelve weeks, using
      Health of the Nation Outcome Scale for People with a Learning Disability (for quality of
      life) and Hospital Anxiety and Depression Rating Scale (for anxiety and depression). The
      qualitative study will involve semi structured interviews with end users to understand usage
      and acceptability of Brain in Hand app with the added impact of the pandemic.
    

Detailed description: 
      The Brain in Hand App (BiH) has been awarded a Small Business Research Initiatives
      competitive grant to develop and test new technologies for the NHS
      https://braininhand.co.uk/news/brain-in-hand-wins-sbri-healthcare-award/ .

      A cohort study is needed to robustly test the BiH technology to evaluate the influence,
      understand its capabilities, users' experiences, and the effect of clinical impact by looking
      to align or use the NICE Evidence Framework for Health Digital Technologies, to reference the
      strengths, weakness, and limitations of BiH specifically around psychological wellbeing and
      by extension, quality of life. This is the purpose of the study.

      There are more than 700,000 autistic people in the United Kingdom. Autism research has
      focused on causes of autism and largely missed opportunities to discover what helps autistic
      people. Research highlights that autistic people experience poor mental and physical health,
      which go unrecognised. Autistic people have very high rates of comorbid physical disabilities
      as well as mental health conditions that are impacted bilaterally by the social environment.
      ASD is unique to the person, so person centred support is needed, and a digital solution may
      offer the best solution in terms of privacy and cost.

      NHS England recently reported autistic people have high levels of unmet needs and existing
      health and social services do not usually cater for this complex group, to deliver person
      centred support. BiH has developed remote person-centred support with self-management tools
      with 24/7 helpline that encompasses a wraparound healthcare service. This has recently
      acquired a further interesting dimension as remote interventions have facilitated enhanced
      accessibility to healthcare during the pandemic.

      The study participants will complete two questionnaires: The self-reporting Hospital Anxiety
      and Depression Scale and the quality of life, Health of the Nation Scale for people with
      Learning Disabilities. The questionnaires will gather baseline data and then three months
      later the same questionnaires will be repeated to understand change. Semi-structured
      questions will be utilised on a randomly selected sample from the main cohort to gain a
      user's experience of clinical need and safety.
    

Observational model: Cohort
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        Members of the participant's existing clinical care team will access their patient records
        and their autism waiting list to identify potential participants for the study with the
        participation criteria followed without deviation.