Measuring what matters to patients: Using goal content to inform measure choice and development.


Introduction: Personalised care requires personalised outcomes and ways of feeding back clinically useful information to clinicians and practitioners, but it is not clear how to best personalise outcome measurement and feedback using existing standardised outcome measures. Method: The constant comparison method of grounded theory was used to compare goal themes derived from goals set at the outset of therapy for 180 children aged between 4 and 17 years, visiting eight child and adolescent mental health services, to existing standardised outcome measures used as part of common national datasets. Results: In all, 20 out of 27 goal themes corresponded to items on at least one commonly used outcome measure. Discussion: Consideration of goal themes helped to identify potential relevant outcome measures. However, there were several goal themes that were not captured by items on standardised outcome measures. These seemed to be related to existential factors such as understanding, thinking about oneself and future planning. Conclusion: This presents a powerful framework for how clinicians can use goals to help select a standardised outcome measure (where this is helpful) in addition to the use of a goal-based outcome measure and personalise choices. There may be areas not captured by standardised outcome measures that may be important for children and young people and which may only be currently captured in goal measurement. There is an indication that we may not be measuring what is important to children and young people. We may need to develop or look for new measures that capture these areas.