Recommendations for research

The Guideline Committee has made the following recommendations for research. The Committee's full set of research recommendations is detailed in the full guideline.

1 Develop case identification tools for common mental health problems

Develop or adapt reliable and valid tools for the case identification of common mental health problems in people with learning disabilities, for routine use in primary care, social care and education settings.

Why this is important

Mental health problems are often overlooked and therefore untreated in people with learning disabilities. This includes common mental health problems such as depression and anxiety disorders, or dementia in Down's syndrome. As a result, the identification of mental health problems in people with learning disabilities was a priority for this guideline.

While case identification tools exist and are recommended for use in the general population, no suitable tools were found that help with initial identification for people with learning disabilities. Research to develop and validate such tools would be valuable when this guideline is updated. More reliable identification should help with early intervention and provide better outcomes, and earlier identification could also reduce costs for the NHS and social care. No relevant ongoing trials were identified.

Existing tools with the best psychometric properties could be adapted and validated for use with people with learning disabilities, or new tools could be developed that are appropriate for use. The tools should be readily available and useable in routine health, social care and education settings (such as by GPs or caregiving staff).

Tools should first be adapted or developed for the most common mental health problems within this population:

  • dementia, depression and anxiety in adults

  • depression and anxiety in children and young people.

A series of cohort studies are needed to validate the tools (new or existing). The studies could include the following outcomes:

  • sensitivity and specificity

  • predictive validity.

2 Psychological interventions for children and young people with internalising disorders

For children and young people with learning disabilities, what psychological interventions (such as cognitive behavioural therapy and interpersonal therapy) are clinically and cost effective for treating internalising disorders?

Why this is important

There is some evidence for the use of psychological interventions for internalising disorders in children and young people within the general population, and in adults with learning disabilities. However no evidence was found to indicate which interventions for internalising disorders are effective in children and young people with learning disabilities, or what adaptations are most helpful.

Psychological interventions commonly used within the general population (such as cognitive behavioural therapy and interpersonal therapy) should be adapted and tested in large randomised controlled trials. This research is crucial to improving the mental health outcomes in this population, and would have a significant impact upon updates of this guideline.

Important outcomes could include:

  • effect on the mental health problem

  • cost effectiveness

  • health-related quality of life.

3 Psychological interventions for depression and anxiety disorders in adults with mild to moderate learning disabilities

For adults with milder learning disabilities, what is the clinical and cost effectiveness of psychological interventions such as cognitive behavioural therapy (modified for people with learning disabilities) for treating depression and anxiety disorders?

Why this is important

Psychological interventions such as cognitive behavioural therapy (CBT) are clinically and cost-effective treatments for anxiety and depression within the general population. While there is some evidence to suggest that these interventions may be useful in treating depression in people with learning disabilities, this is limited. Further research is also needed for CBT for anxiety disorders such as generalised anxiety disorder, obsessive compulsive disorder and post-traumatic stress disorder. The existing evidence on CBT for learning disabilities is based on small feasibility trials, with various and inconsistent adaptations across the studies. Many therapists are also reluctant to use CBT in this population. As a result, people with learning disabilities may be missing out on effective treatments. Effective treatments would reduce unnecessary suffering and impairment, improve quality of life and ultimately should reduce the demand for mental health and social care services.

Modifications of CBT need to be tested in large randomised controlled trials, and any modifications should be clearly explained and documented. In order to achieve an appropriate sample size, several different services may need to cooperate. Important outcomes could include:

  • effect on the mental health problem

  • cost effectiveness

  • health-related quality of life.

4 Pharmacological interventions for anxiety disorders in people with learning disabilities who have autism

What is the clinical and cost effectiveness and safety of pharmacological interventions for anxiety disorders in people with learning disabilities who have autism?

Why this is important

Anxiety disorders are common in people with learning disabilities who have autism. However, there is no high-quality evidence on pharmacological interventions for anxiety disorders in people with learning disabilities who have autism. They may be more susceptible to adverse events, and have particular difficulty communicating side effects. There may also be differences in effectiveness compared with the general population. These uncertainties about side effects and effectiveness may contribute to the under-treatment of mental health problems in people with learning disabilities who have autism. Research is therefore needed to determine the safety and effectiveness of pharmacological interventions and make it clear what treatments are effective for anxiety in people learning disabilities who have autism. Clarity over this issue could have a substantial impact upon quality of life for people with learning disabilities who have autism and their carers, as well as reducing costs to the NHS.

Randomised controlled trials should be carried out to compare the clinical and cost effectiveness of pharmacological interventions for anxiety disorders in this population. Several services may need to collaborate in order to ensure sufficient sample size. Researchers would need to take into account factors such as genotype and pharmacological treatment for other conditions when designing these trials. Important outcomes could include:

  • effect on the mental health problem

  • side effects

  • cost effectiveness

  • health-related quality of life.

5 Psychosocial interventions for people with more severe learning disabilities

For people with more severe learning disabilities, what is the clinical and cost effectiveness of psychosocial interventions to treat mental health problems?

Why this is important

People with more severe learning disabilities whose communication is non-verbal are likely to need tailored interventions to address mental health problems. Research is particularly limited on mental health problems in people with more severe learning disabilities. Further research is needed into different types of interventions, such as social interactions and building resilience. This research would fill a need within mental health services, which are currently limited in their ability to provide effective interventions to this group.

Randomised controlled trials should be carried out to compare the clinical and cost effectiveness of psychosocial interventions, which may include multiple components, to prevent and treat mental health problems in people with more severe learning disabilities. Several services may need to collaborate in order to ensure sufficient sample size. Important outcomes could include:

  • effect on the mental health problem

  • cost effectiveness

  • health-related quality of life.

When designing these trials, appropriate measures will need to be developed for mental health problems in people with more severe learning disabilities.

6 The experiences of people with learning disabilities and mental health problems in services

What experience do people with learning disabilities have of services designed to prevent and treat mental health problems and how does this relate to clinical outcomes?

Why this is important

Mental health service provision for people with learning disabilities is complex and varies across the UK. There appears to be no high-quality evidence or ongoing research for any particular approach. Evidence on the experiences, aspirations and mental health of young people as they prepare for adulthood would help in the development of preventative strategies. Evidence on what service models are most effective and acceptable to people with learning disabilities would help to improve service design, staffing decisions and patient outcomes. This is also an area of national priority, as explained in the NHS Five Year Forward View.

To understand what experience people with learning disabilities have of services, a series of studies covering the following should be conducted:

  • The experiences and life course trajectories of young people (aged 13–17 years) in terms of their aspirations and goals, including whether the support they and their families get affects their mental health and their expected outcomes as they prepare for adulthood.

  • The experience people have of mental health inpatient services (specialist learning disability services or non-specialist services), including factors that may have prevented the need for admission and how inpatient admission affects them. Studies should include economic modelling.

  • The experience people have of being discharged from mental health inpatient services (specialist learning disability services or non-specialist services), after a stay of one year or more. In particular: the factors that may have helped them to be discharged earlier, what support is effective after discharge, and how to lower the risk of readmission.

  • The experiences people have during a crisis, including how effective crisis support is in meeting their needs, minimising risk and helping them recover.

  • The experiences of people with milder learning disabilities (including people on the autistic spectrum) and common mental health problems (such as anxiety or depression) in accessing community-based interventions.

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  • National Institute for Health and Care Excellence (NICE)