The importance of children and young person involvement in scoping the need for a paediatric glucocorticoid-associated patient reported outcome measure
Abstract:Background
For many children and young people (CYP) with paediatric rheumatic conditions, glucocorticoid medications and their associated side-effects have a substantial impact on disease experience. Whilst there are physician-rated measures of glucocorticoid toxicity, no parallel patient reported measure has been developed to date for CYP with rheumatic disease. This manuscript describes a series of public patient involvement (PPI) events to inform the development of a future paediatric glucoc… Show more
“…Marinello et al [ 2 ] incorporated PPI into their practice via a new BehçeTalk Programme, empowering rare disease patients through education and capacity building to promote active involvement in therapeutic decision-making. Singhal et al and Elliott et al focused on engaging young people in research to improve patient-reported outcome measures and communication [ 3 , 4 ]. Esen et al [ 5 ] went one step further, sharing the voices of young people in rheumatology research via the development of an enduring national youth advisory group that is active and eager to co-create throughout all stages of the research cycle.…”
Patient and public involvement is an idea whose time has firmly come. It is the views of these Guest Editors that it is the right thing to do morally and improves research quality and applicability.
“…Marinello et al [ 2 ] incorporated PPI into their practice via a new BehçeTalk Programme, empowering rare disease patients through education and capacity building to promote active involvement in therapeutic decision-making. Singhal et al and Elliott et al focused on engaging young people in research to improve patient-reported outcome measures and communication [ 3 , 4 ]. Esen et al [ 5 ] went one step further, sharing the voices of young people in rheumatology research via the development of an enduring national youth advisory group that is active and eager to co-create throughout all stages of the research cycle.…”
Patient and public involvement is an idea whose time has firmly come. It is the views of these Guest Editors that it is the right thing to do morally and improves research quality and applicability.
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