Children’s Palliative Care Outcome Scale (C-POS) Videos Launched

Person-centred care is a core health value of modern health care ⁽¹⁾. The overarching aim of the Children’s Palliative care Outcome Scale (C-POS) is to develop^(2-11) and validate ^(12-13) a person-centred outcome measure for children and young people and their families affected by life-limiting and life-threatening conditions. A recent systematic review has highlighted that no measures suitable for use in this population currently exist ⁽¹⁴⁾. In addition, the development of such a measure has been highlighted as an international research priority ^(11,15). The C-POS research programme draws together a unique multidisciplinary collaboration to addresses a current gap in both methods and evidence. This research brings together families, researchers, health and social care professionals and champions children’s voices in the research ⁽¹⁶⁾, rather than relying on proxy data. The C-POS tools that have been developed in sub-Saharan ^(9-11,13) Africa and the UK^(2-8,12) will be the first fully validated children and family centred outcome measure for use in paediatric palliative care. Once robust testing and evaluation of the C-POS tools has been completed, they can be implemented into routine clinical practice which if used regularly to measure and document change in patient’s status, can inform and improve care for children and young people with life-limiting and life-threatening illnesses. However, in order for C-POS to improve patient outcomes, the implementation must be carefully considered ^(11-17).

To better understand implementation, a systematic review was conducted to identify barriers and facilitators to implementing outcome measures in paediatric healthcare settings globally ⁽¹⁸⁾. This informed a subsequent qualitative interview study to better identify barriers and facilitators that were specific to implementation of outcome measures in paediatric palliative care ⁽¹⁹⁾. These findings informed the development of a Theory of Change through workshops ^(20-21) from which an implementation plan was developed ²²⁾. One of the key strategies identified was educating professionals, children and families on the benefit outcome measures have on patient care. Parents in the workshops felt this information would be best communicated through short videos and so we set out to develop short videos in collaboration with parent patient and public involvement members based on the potential benefits identified in the previous research. We developed two videos: one for healthcare professionals and one for family members.

These videos can be found on the King’s College London Cicley Saunders Institute YouTube channel: https://www.youtube.com/user/csikcl

For family members: https://www.youtube.com/watch?v=0UMJdSAzz9U

For healthcare professionals: https://www.youtube.com/watch?v=wNeOWqFkz-Q

You can find more information about the family of Palliative care Outcome Scales (POS) here

References for Further Reading