At the UK's national paediatric palliative care conference hosted by Together for Short Lives, Professor Sir Alan Craft chaired an invited plenary session on outcome measurement for children, young people and their families who are affected by life limiting and life-threatening conditions. Lizzie Chambers of Together for Short Lives (TFSL), Dr Ann Goldman (the 1st paediatric palliative are consultant) and Dr Richard Harding of the Cicely Saunders Institute, presented work to date and potential ways forward in measurement for this group of service users.

They presented the literature to date that showed an urgent need for outcome measurement to advance the research evidence for children and young people, and noted the current absence of validated tools. Dr Harding described the world's first validated tool from children, which excitingly has been developed and validated in three African countries. The African Palliative Care Association’s Children's POS (APCA C-POS) project has been led by APCA (PI Dr Julia Downing) and funded by AIDS Star. The tool was subjected to rigorous testing to determine validity and reliability, and is an important example of South-North learning. The analysis of C-POS is complete, and we look forward to sharing the tool on the POS website.