Background

The CAMHS Learning Disability team in North East Lincolnshire were looking for an outcome measure that could provide information about the mental health of a young person with learning disabilities. Measures used before were behavioural, and focused on a parents’ ability to manage, rather than looking at the child’s presenting difficulties.

What was the problem?

The service supports a small population and they wanted a measure that assessed emotional wellbeing as well as behavioural issues. The service is provided for young people with moderate, severe or profound learning disabilities. Whilst children have a range of abilities, many cannot read or are not yet verbal and unable to complete traditional outcome measures.

Who was involved?

Within the CAMHS Learning Disability team Dr Emma Berkman-Smith, Highly Specialist Clinical Psychologist was responsible for implementing use of the Developmental Behaviour Checklist, alongside her team. This included a learning disabilities nurse, a psychiatrist and an assistant psychologist, who carries out the scoring of the measures as part of their role.

Tackling the problems

The initial challenge for the service was encouraging families to complete the Developmental Behaviour Checklist and return it. The checklist is lengthy and parents have at times found it challenging and time consuming. The service tried to make time for the form to be filled in at the waiting room, but this would often impact on their clinical time. If they gave the DBC to families to complete between sessions, the return rate was very low. Therefore, the service started sending out the DBC with the first appointment letter, requesting that families return it at the first appointment.

Impact

The use of the DBC has had a positive impact on the service. It is straightforward to score, and the service uses an online algorithm that allows them to measure reliable and clinical change free of charge. It forms part of the bimonthly patient experience report to commissioners, identifying any change that occurs during treatment. The service believe it has captured data well and enabled them to see young people’s functioning improving due to their interventions by the reduction in their scores and measurement against clinical cut off scores.

Key Learning

  • For measuring progress for a particular intervention, the DBC works well. For ongoing cases, which are open over longer periods of time for interventions such as medication management; then this appears less useful as the level of change is not as significant and can skew the data already collected.
  • It is a parent report measure, therefore the service needs to take this into account when considering the scores. Other forms of measurement are used routinely and input from all aspects of the child’s life considered. The DBC can also be used with teachers, which has also been beneficial to compare with the scores from parents.
  • As it collects data pre and post treatment, it works effectively to see whether change has occurred, but the service is not yet sure how effective is over a long-term intervention.
  • Clinically it has been very helpful to identify areas of need as part of the assessment.
  • The measure needs to be filled out before the first appointment to aid return.

Next Steps

The DBC is now NICE guidance recommended and so the service will continue to use it and begin a pilot for young people using the service for medication management only. The service will also be seeking feedback from parents on ease of use of the measure in comparison to other outcome measures.

Many thanks to Emma Berkman-Smith for providing us with this case study.