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Goal-based measurement in paediatric settings: implications for practice
Jenna Jacob1, Julian Edbrooke-Childs2,3, Halina Flannery4
1Child Outcomes Research Consortium, Anna Freud Centre, London, UK jenna.jacob@annafreud.org.
Insights
Young people with chronic illnesses often face mental health challenges. Goal-based outcomes, reflecting individual patient priorities, offer a nuanced approach to measuring recovery beyond physical health in pediatric care.
Area of Science:
- Pediatric Health
- Mental Health
- Psychology
Background:
- Chronic physical illnesses in youth are linked to increased mental health difficulties.
- Current pediatric care often prioritizes physical health outcomes and functioning.
- Existing measures of functioning, like quality of life, may not capture individual patient experiences fully.
Purpose of the Study:
- To explore the practical application and interpretation of goal-based outcome measures in pediatric settings.
- To build upon existing research by offering a reflective commentary based on clinical and research experience.
- To highlight the importance of individualized recovery goals for young people with chronic conditions.
Main Methods:
- Reflective commentary drawing on authors' clinical and research experience.
- Analysis of the practical implications of using goal-based outcome measures.
- Inclusion of examples to illustrate the nuances of patient-defined recovery.
Main Results:
- Goal-based outcome measurement can complement standardized measures in pediatric care.
- Young people's understanding of 'recovery' is often multifaceted and personal.
- Professionals' assumptions about recovery may differ from patients' nuanced perspectives.
Conclusions:
- Goal-based outcomes are crucial for understanding meaningful recovery from the young person's perspective.
- Integrating goal-based measures requires careful consideration of individual patient needs and experiences.
- This approach enhances patient-centered care by valuing personalized recovery goals.
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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