Jacob, Jenna;
Edbrooke-Childs, Julian;
Flannery, Halina;
Segal, Terry Y;
Law, Duncan;
(2022)
Goal-based measurement in paediatric settings: implications for practice.
Archives of Disease in Childhood
10.1136/archdischild-2021-322761.
(In press).
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Abstract
There is an observed link between physical illness and mental health difficulties and an increased likelihood of mental health difficulties in young people with chronic health conditions. The main outcome focus in paediatric settings is on physical health outcomes and functioning. In terms of functioning, the focus is on quality of life, measures of emotional well-being and perceptions of personal change, which are likely to be multifaceted and vary between patients. To complement standardised and diagnostically based measures, goal-based outcome measurement may be considered. The aim of this paper is to build on previous research, to provide a reflective commentary based on the authors’ clinical and research experience in the use and interpretation of goal-based outcomes, to address what using goal-based measures for outcome purposes in these settings means practically. Examples are provided to demonstrate the importance of considering meaningful outcomes of importance to young people and how professionals may presume that physical ‘recovery’ is the goal of treatment, but what recovery means to that young person may be very nuanced. Further key considerations and suggested phrasing are given to introduce and work with young people’s goals.
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