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Expert meeting on PROMS in palliative care for children and young people

In collaboration with ‘Together for Short Lives’ (the leading UK charity supporting children, families and professionals with respect to life-limiting and life-threatening conditions), we brought together stakeholders from across the UK.  The purpose of the day was establish the key methodological and implementation issues in developing and validating an outcome measure for children.

Key speakers in the morning included

  • Dr Richard Harding outlining the science and successes in outcome measurement in palliative care;
  • Dr Fliss Murtagh describing recent and ongoing UK advances in care improvement using PROMs;
  • Dr Ann Goldman outlining the findings of the TaskForce for Outcome Measurement;
  • Lucy Coombes presenting a systematic review on outcome measures in children and young people’s palliative care;
  • Dr Julia Downing presenting the first findings from the validation of the African children’s POS. 

 The afternoon provided stakeholders with the opportunity to work in small groups to identify the key features, methodological and implementation challenges of developing such a tool. The day was a unique meeting of experts from within children’s palliative care and experts from related fields.