Want to find out what young people and their families think of outcome measures?

Summary

As a founding member of CORC and a CYP IAPT service, Leeds CAMHS has been working to embed outcome measures within clinical practice for over a decade.

The commissioning of the service is also now increasingly focused on the meaningful use of outcome measures. As such Leeds CAMHS wanted to explore young people and their carers’ experiences of outcome measures.They designed an online and paper survey which they promoted using a range of methods, including designing posters, using social media and informing clinicians. Following an initially poor uptake (four responses), the survey was handed to patients when they attended appointments. The results provided some key learning that Leeds CAMHS will be able to use to improve the use of outcome measures within their service. 

Background

The challenge to fully embed outcomes measures in clinical practice has involved a consideration of the obstacles for clinicians and also young people and their families. The majority of previous research into the use of outcome measures explores the psychometric properties of specific outcome measures and the service impact. Fewer studies have looked at the acceptability of outcome measurement it clinicians or users’ views of outcome measures.

Research suggests outcome measures ensure the voice of the client is heard (Greenhalgh, 2009) however, there is limited research exploring clients attitudes to outcome measures (Batty et al, 2013). Wolpert, Curtis-Tyler and Edbrooke-Childs (2014) attempt to address this gap with their research exploring children, their families’ and clinicians’ experience of using outcome measures in both a diabetes service and a mental health service, using semi-structured interviews.

Leeds CAMHS' study specifically explores young people and their carers’ experiences of the use of outcome measures. The findings will be used to inform best practice, highlight areas for improvement and inform further research.

   Key learning

For the service:

• Clinicians need to explain how outcome measures relate to the service, improving young people's understanding of them. This should include how the information is used, i.e. that questionnaires are completed and discussed in sessions, input on a secure database, with changes being discussed and tracked by clinicians and young people together, and then included in discharge summaries.
• Clinicians should explain that there are a number of outcome measures available whilst also explaining the specific measures they use e.g. CORS, RCADS. They should explain that outcome measure questionnaires are standardised and provide reliable scores to use and compare.
• Improvements are needed in how Leeds CAMHS shares information about outcomes with young people and their families at an individual and service level.

Recommendations for future research:

• The online survey collection method was not effective with only four responses received. Future research should employ a targeted selection process, although this approach raises ethical considerations around recruitment bias and possible demand characteristics.
• A detailed definition and examples of outcome measures should be provided at the start of future surveys. Not all the people that completed the survey may have seen an outcome measure. This is a disadvantage of the sampling strategy used. 
• Young people and families should be asked to complete surveys in their sessions; this would provide the space for any questions in a relevant context.
• On reflection the survey only asked about the process of completing outcomes measures. Future research could ask about how clinician discussed outcomes and explore what makes outcome measures helpful for some people and not for others.
• Employing a qualitative method e.g. semi structured interviews would improve the understanding of survey questions and provided more detail about participants' experiences

Outcomes and impact

• Leeds CAMHS have a clearer understanding of how outcome measures are understood by young people and families in the service.
• 4 out of 9 responses described outcome measures as helpful in their sessions e.g. "It allows me to pinpoint how I'm feeling in the different areas of my life." Other responses were less positive: "They are annoying." "Sometimes not really find it that helpful. [They] don't explain what I'm on about."
• Learning points will be taken into consideration in developing clinicians' use of outcome measures in treatment.
• The study will be revisited as part of future research, which may be designed with young people, and will aim to obtain a broader range of views.

Next steps

• Make recommendations for further research and for outcome measurement in Leeds CAMHS
• Share findings with stakeholders, including young people via posters, social media and information cards.

Many thanks to Rosie Wilson and Penny Netherwood for providing us with this case study.