Abstract
There are many widely used, validated patient reported outcome measures for physical and mental health. However, capturing outcomes from young people living with chronic health conditions presents a challenge, needing to take the complex interplay of physical and mental health into consideration. The authors found that regularly used outcome measures for child and adolescent emotional well-being in paediatric settings largely fall into two groups: paediatric quality of life and child and adolescent mental health measures. The applicability and potential for use of these measures within this context is discussed. Whilst offering some utility, neither approach leaves sufficient space for young people’s individual experiences of illness and treatment. The scope of using alternative qualitative approaches that capture the rich stories and experiences of young people living with chronic illnesses is considered.
Highlights
The psychological impact of chronic health conditions for young people, the importance of integrating psychological and physical care, and the necessity to support holistic health outcomes have been highlighted by many [1,2,3].Many outcome measures collected by paediatric healthcare professionals as part of routine practice are used for service improvement and clinical learning, and are regularly driven by management and government, to compare the quality and effectiveness of interventions and evaluate cost-effectiveness [4]
The shift away from a reliance on physiological health outcomes has led to frequent measurement of functional status, health perception, and preference-based measures as well as patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs)
The authors identified three outcome themes that are covered by the PedsQL measure and six additional themes, which the children report to have an important impact on quality of life and emotional well-being and are less commonly covered in Quality of Life (QoL) questionnaires
Summary
The psychological impact of chronic health conditions for young people, the importance of integrating psychological and physical care, and the necessity to support holistic health outcomes have been highlighted by many [1,2,3]. Outcome measures in healthcare have traditionally focused on measures of mortality and on the associated physiological markers such as blood pressure and test results but, with the increase in patient autonomy and choice, have increasingly included aspects of patient experience of perceived outcomes [5]. The shift away from a reliance on physiological health outcomes has led to frequent measurement of functional status, health perception, and preference-based measures as well as patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs). The current paper reviews current PROMs and discusses their validity and utility in a paediatric psychology setting. It concludes with a description of a narrative approach to outcome measurement, its potential for capturing meaningful outcomes, and suggestions for future work.
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