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 glucocorticoid-associated patient reported outcome measure (PROM).

Methods

One large group PPI event was advertised to CYP with experience of glucocorticoid medication use and their parents through clinicians, charities and existing PPI groups. This featured education on the team's research

SUBMITTER: Singhal S 

PROVIDER: S-EPMC9568975 | biostudies-literature | 2022 Oct

REPOSITORIES: biostudies-literature