Table 2.

Recommendations for implementation and sustained use of new person-centred outcome measures into care for children and young people with life-limiting and life-threatening conditions and their families.

Recommendation	Sub-themes informing recommendations
1. Children and families must be involved in the development of PCOMs to ensure that measure characteristics do not act as barriers to implementation	• Acceptability and usability for children • Language being meaningful
2. Strategies for implementation should be designed collaboratively with professionals to ensure they are optimal	• Negative impacts on care • PCOMs not used as intended • Burden and capacity
3. The benefits of PCOMs for care should be explained to families and professionals to facilitate implementation	• Explaining the benefits and securing ‘buy-in’ • Understanding what is important to patients and families • Improved communication and collaborative working • Standardising data collection and reporting
4. The professional administering the measure should be known and trusted by the child and family	• Knowing and trusting measure administrators
5. Completion of the measure should be a collaborative dialogue, in which the child, family and healthcare professional are fully involved where possible and appropriate	• Understanding what is important to patients and families • PCOMs not used as intended
6. Professionals should respond appropriately to issues raised through completion of the measure and ensure children and families are involved and informed of any changes in care as a result	• Understanding what is important to patients and families • PCOMs not used as intended
7. Discussions should be held with children and families to address privacy concerns, find out who they are comfortable with their information being shared with and to explain use and benefits of information-sharing in relation to PCOMs	• Confidentiality and information sharing • Explaining the benefits and securing ‘buy-in’ • Knowing and trusting measure administrators
8. Once robustly and scientifically developed and validated, PCOMs should be translated to locally relevant languages, to increase usability for families where the local language is not their primary language	• Language barriers • Language being meaningful