Research digest: Measuring what matters to patients
Measuring what matters to patients: Using goal content to inform measure choice and development
Jenna Jacob, Julian Edbrooke-Childs, Duncan Law and Miranda Wolpert
Published in: Clinical Child Psychology and Psychiatry (Dec 2015)
“We think this is an important way for practitioners and others to rethink how outcome measures are considered and chosen for use. We hope this research helps to support practitioners in conversations about goal setting and subsequent collaborative outcome measurement selection with children, young people and their families to ensure that the outcomes being measured are the right ones for that child/family.” Jenna Jacob
This research presents a powerful framework for how clinicians can use goals to help select an outcome measure (where this is helpful) and clinical feedback tools, enabling them to personalise care and outcomes within widely used models of routine outcome measurement.
Standardised outcome measures may not capture some areas that are important for children and young people, and which may only currently be captured in goal measurement. There is an indication that we may not be measuring what is important to children and young people, and that we need to develop or look for new measures that capture these areas.
Personalised care requires personalised outcomes and ways of feeding back clinically useful information to professionals, but it is not clear how best to personalise outcome measurement and feedback using existing standardised outcome measures. This research compared goal themes derived from goals set by children, parents and practitioners at the outset of therapy to existing standardised outcome measures.
Can goal content be used to shape outcome and feedback tool choices?
Considering goal themes did help to identify potential relevant outcome measures.
For example, some goals derived from parent-led goals, such as ‘co-operation’ and ‘being calmer’ mapped to items on standardised tools focused on parental self-efficacy. Other goal themes related to coping with specific symptoms, derived from children, parents and practitioners, mapped to items on standardised tools focused on particular presenting difficulties and general wellbeing.
As most of the goal themes matched more than one standardised tool, outcome measurement should be chosen based on collaborative discussions to determine what is most important to the individual. Setting more clinically helpful goals may give a focus to the work and point to more appropriate tools to track progress.
Clinicians may want to consider the specific goals the person has set, rather than the nature of their difficulties. For example, someone attending with excessive handwashing and severe OCD may agree their goal as ‘better family relationships’. Rather than just measure change in symptoms, we suggest a focus on what is important to them, such as family relationships, and measuring change in that area. The intervention may remain CBT for handwashing, but interest in symptom change would be for the purpose of improving relationships, even if the mechanism by which they improve is through work on handwashing.
Are there goal themes not captured by standardised outcome and feedback tools?
20 out of 27 goal themes corresponded to items on at least one commonly used outcome measure. Seven did not correspond to any item on the standardised outcome and feedback tools considered, and which seem to relate to existential factors such as understanding, thinking about oneself and planning for the future. To address this, we may need to develop or look for new tools that capture these areas.