• Challenging Behaviour: A Unified Approach - Update (2016) 
• Challenging Behaviours - Psychological interventions for severely challenging behaviours shown by people with learning disabilities (2004) 
• Commissioning Clinical Psychology services for adults with learning disabilities (2011)
• Core Service Specification Toolkit Commissioning Services for people with a learning disability and behaviour which challenges that require support
• Dementia and People with Learning Disabilities (2015) 
• Good Practice Guidelines for Clinical Psychologists when assessing Parents with Learning Disabilities (2011) 
• Good Practice Guidelines for UK Clinical Psychology Training Providers for the Training and Consolidation of Clinical Practice in Relation to Adults with Learning Disabilities 
• Guidance on Neuropsychological Testing with Individuals who have Intellectual Disabilities 
• Guidance on the Assessment and Diagnosis of Intellectual Disabilities in Adulthood
• ​Incorporating Attachment Theory Into Practice: Clinical Practice Guideline for Clinical Psychologist working with People who have Intellectual Disabilities (2017) 
• LD Professional Senate - Outcomes Paper (2016) 
• Learning Disability: Definitions and Contexts (2000) 
• Mini MANS-LD User Guide 
• ​Psychological Therapies and People who have Intellectual Disabilities (2016) 
• Quality outcome measure for individuals with dementia (QOMID) 
• Quality outcome measure for individuals with dementia (QOMID) Scoring Sheet

A commitment was made by the Learning Disability Faculty of the British Psychological Society at its annual conference in April 2009 for the Faculty to develop a ‘menu’ of recommended measures for use by psychologists and the wider services that support adults with learning disabilities whose behaviour challenges services.

Project participants from ten services across England used one or more of a selection of outcome measures before and after challenging behaviour interventions. Project participants also completed a ‘Utility of Measures’ questionnaire to provide a perception of how useful and valid each measure had been.

From the project data, four outcome measures are recommended for use for challenging behaviour interventions:

• The Behavior Problems Inventory-01 (Rojahn et al., 2001). 
• The Challenging Behaviour Interview (Oliver et al., 2002). 
• The Health of the Nation Outcome Scales - Learning Disability version (Roy et al., 2002). 
• The Maslow Assessment of Needs Scales - Learning Disability (Skirrow & Perry, 2009).

A summary table of other outcome measures reported as being in use during the project was also collated from available data.

• Download the full project report

Measure Information

The Behavior Problems Inventory (BPI-01) is a 52-item respondent-based behaviour rating instrument for self-injurious, stereotypic, and aggressive / destructive behaviour. Items are rated on a frequency scale and a severity scale. Instructions for use are provided on the measure.

Rojahn et al. (2001) report the BPI-01 to be a reliable (retest reliability, internal consistency, and between-interviewer-agreement) and valid (factor and criterion validity) instrument for assessing challenging behaviour in people with a learning disability. Further information is also provided in Rojahn et. al (2012).

Project Results: The results from the ‘Utility of Measures’ sheets for the BPI-01 suggest it was perceived by project participants as being clear and easy to use, and relatively short to administer. It was seen as being able to detect change for nearly all people on whom it was administered, and this change was thought to be consistent with clinical opinion. The key limit to the measure was highlighted as being its use of terminology that is outdated in the UK and may therefore be deemed disrespectful (i.e. ‘mental retardation’).

There was a significant difference (p=0.0002) between the totalised BPI-01 scores for the pre- and post-intervention groups. This suggests that the BPI-01 is able to differentiate between the two populations, and may therefore be useful for reporting outcomes at a service level as well as for individual clinical interventions.

Based on the results of this project, the BPI-01 is recommended for use as an outcome measure for challenging behaviour interventions in adult learning disability services.

You must be signed-in to access the following materials

• Download the Behavior Problems Inventory (BPI) (members only)

• Download the Behavior Problems Inventory - Short Version (BPI-S) (members only)

The BPI-S is a shorter, 30-item version of the BPI. It was recently introduced in two articles in the Journal of Intllectual Disability Reserach (Rojahn et al., 2012a and 2012b).

As the BPI-S was not included in the LD Faculty project we have no further data on which to base a recommendation for its use. The referenced article does, however, include information on test development, reliability and validity.

References

Rojahn, J., Matson, J.L., Lott, D., Esbensen, A.J. & Small, Y.(2001). The Behavior Problems Inventory: An Instrument for the Assessment of Self-Injury, Stereotyped Behavior, and Aggression /Destruction in Individuals With Developmental Disabilities. Journal of Autism and Developmental Disorders, 31 (6), 577-588.

Rojahn, J., Rowe, E. W., Sharber, A. C., Hastings, R., Matson, J. L., Didden, R., Kroes, D. B. H. and Dumont, E. L. M. (2012a). The Behavior Problems Inventory-Short Form for individuals with intellectual disabilities: Part I: development and provisional clinical reference data. Journal of Intellectual Disability Research, 56 (5), 527-545

Rojahn, J., Rowe, E. W., Sharber, A. C., Hastings, R., Matson, J. L., Didden, R., Kroes, D. B. H. and Dumont, E. L. M. (2012b). The Behavior Problems Inventory-Short Form for individuals with intellectual disabilities: Part II: reliability and validity. Journal of Intellectual Disability Research, 56 (5), 546-565.

Measure Information

The Maslow Assessment of Needs Scales - Learning Disabilities (MANS-LD) is a 19 item questionnaire designed for use with a person with a learning disability. Response is via a 5 point scale with symbols to help the person decide their response. Questions are focussed on how happy the person is with the way some of their basic needs are being met. The MANS-LD is supplemented by an 8 item questionnaire adapted from the World Health Organisation Quality of Life Scale (WHOQOL-8; Power,2003), which also has a 5 point scale to help the person decide their response. Instructions for use of the MANS-LD and WHOQOL-8 are provided on the measure.

The MANS-LD was developed by Paul Skirrow and Ewan Perry (© 2009 to Mersey Care NHS Trust). The authors describe the measure as having good face validity, applicability to a range of settings and consistency with national policy such as Valuing People and the Human Rights Act. The authors have piloted the scale to refine standardisation, but no validation or reliability studies have been completed.

Project Results

Issues in some of the services participating in the project meant that the amount of final data for the MANS-LD was limited. This should be considered when evaluating the project results.

The results from the ‘Utility of Measures’ sheets for the MANS-LD suggest it was perceived by project participants as reasonably short to administer. The fact that it is designed for use with people with a learning disability appears to have contributed to a general perception that it is very respectful in its design. There were some qualitative comments by project participants highlighting that some of the questions could be difficult for people with a learning disability to understand, which could contribute to the scale being lengthy to answer. This may indicate that further validation and standardisation would be helpful. On balance, however, the MANS-LD was perceived as a good measure for use with people with a learning disability with the ability to answer the questions. It was seen as being able to detect change for most people on whom it was administered, and this change was thought to be mostly consistent with clinical opinion.

There was a significant difference (p=0.0121) between the totalised MANS-LD scores for the pre- and post-intervention groups. This suggests that the MANS-LD is able to differentiate between the two populations, and may therefore be useful for reporting outcomes at a service level as well as for individual clinical interventions.

Based on the results of this project, the MANS-LD is recommended for use as a self-report outcome measure that reflects the service user’s perception of their quality of life before and after a challenging behaviour intervention. There are, however, some additional considerations for services, as discussed above.

Download

• MANS Manual
• MANS-LD Easy Read Retrospective
• WHO-QOL Easy Read

MANS-LD Easy Read Retrospective- compressed (N.B. - this version of the prospective MANS-LD has been compressed to meet the BPS website requirements. This has left a 'watermark' advertising the compression software.

• Learn more about the STOMP project on NHS website

In summary, in July 2015 research commissioned by NHS England on the prescription of psychotropic drugs to people with learning disabilities was published in a number of reports, including those by Public Health England and NHS Improving Quality. The research found that:

• Medicines are often used for long periods of time without adequate review
• There is a much higher rate of prescribing of medicines associated with mental health difficulties amongst people with learning disabilities than the general population, often including more than one medicine in the same class, and in the majority of cases with no clear justification
• There is poor communication with parents and carers, and between different healthcare providers

The Public Health England report estimated that up to 35,000 adults with a learning disability were being prescribed an antipsychotic, an antidepressant or both without appropriate clinical justification.

Although there is limited evidence on the side-effects of psychotropic medications for people with learning disabilities, research with other groups of people has highlighted an increased risk of sedation, weight gain, anticholinergic effects, stroke and mortality. These medications are therefore thought likely to cause significant harm for some people with learning disabilities.

Following these reports, NHS England led a ‘call to action’ which brought together representatives of professional, expert by experience and carer groups to make sure changes were made to these inappropriate practices. This led to a pledge to reduce over medication and the start of STOMP. The 3 year project runs until 2019. 

STOMP is about making sure people get the right medicine if they need it and that people get all the help they need in other ways as well. It is about encouraging people to have regular medication reviews, supporting health professionals to involve people in decisions about their care and showing how families and social care providers can be involved. STOMP also aims to improve awareness of nondrug therapies and practical ways of supporting people whose behaviour is seen as challenging.

The Society was one of the original signatories to the STOMP project pledge, which was launched on 1 st June 2016. The STOMP programme links to the objectives of the Society, especially through improving the awareness and use of the ‘alternatives to medication’, which are predominantly psychologically informed approaches. A key role for the Society is the general promotion of these alternatives and providing support to enable the challenge of prescribing practice where there are queries about its quality. In addition, the Society aims to support its members who work in learning disability services to influence and take a lead role in systemic changes in their teams, so as to reduce the likelihood of inappropriate prescribing, increase the robustness of medication review and improve the provision of the alternatives to medication.

The Society actions in relation to STOMP have been coordinated through its Faculty for People with Intellectual Disabilities (FPID) of the Division of Clinical Psychology. 

Although the Society’s work is being coordinated by FPID, there is a role for all members who come in to contact with people with learning disabilities.

• NHS England STOMP website
• Psychological Therapies and People who have Intellectual Disabilities (2016)
• STOMP Leaflet
• STOMP toolkit for GP prescribers
• STOMP toolkit for Social Care providers

• Debra Moore Associates