Message on behalf of Mel Lewis – Project Manager End of life Care Implementation Group & Professor Anthony Byrne - Marie Curie Palliative Care Research Centre, Cardiff University.

Outcomes are the ‘what’ we need to measure such as things like pain, anxiety, and quality of life. The ‘how’ we measure them (such as a pain assessment tool or a quality of life tool) will be matched up once we have agreement on the key – or core – outcomes first. 

This work is being undertaken on behalf of the End of Life Board and will align with other elements of the Board’s work on additional measures of service quality such as efficiency, safety and patient experience. It is funded by Marie Curie and we are undertaking the project in collaboration with Cardiff University.

From the work to date we have generated a longlist of 23 outcomes. We now need to obtain your views and the views of others involved in adult palliative care in Wales. We are inviting a broad range of stakeholders to participate:

• People who have received palliative care in Wales and their family and friends who have been involved in their care on a regular basis.
• Clinicians and healthcare providers involved in providing palliative care to people in Wales
• Social care providers as well as volunteers involved in supporting people receiving palliative care in Wales
• Staff working in non-clinical managerial roles in palliative care settings in Wales
• Staff working in relevant third-sector organisations in Wales
• Palliative care researchers in Wales

We are very grateful to you for considering participating in our online survey and for your help with promoting the survey among others who have experience with providing, receiving or supporting palliative care services in Wales. Please share the survey link with your colleagues and team members but also with family, friends and the wider public (as appropriate). This is your opportunity to have a say on how assessing the effectiveness of palliative care services across Wales can be made more consistent in the future and to help us obtain a representative consensus on what is important.  If you have access to social media we are enclosing Facebook/Twitter-friendly images that could be used alongside social media posts about the survey as well as a survey flyer in pdf format that could be printed or circulated by email.

Taking part in the survey simply involves going through the list of 23 outcomes and providing a rating for how important it is to include each outcome in the final core outcome set on a scale from 1 (not important at all) to 9 (critically important). Completing the survey should not take longer than 10-20 minutes. More detailed information on the background of the survey can be found in the enclosed study summary as well at the beginning of the online survey.

The online survey can be found here:

https://cardiff.onlinesurveys.ac.uk/outcomes-for-palliative-care-services-in-wales

Upon request, the survey can also be made available as a hardcopy along with a pre-paid envelope to return the completed survey to the research team at Cardiff University. Please contact Silvia Goss (gosss1(at)cardiff.ac.uk) to request a paper survey or if you would prefer to complete the survey in Welsh.

We very much appreciate your support with promoting this survey to allow us to include the perspectives of as broad a range of stakeholders in palliative care as possible. If you have any questions, please do not hesitate to contact Silvia Goss (gosss1(at)cardiff.ac.uk) at the Marie Curie Research Centre at Cardiff University.

Many thanks for your support with this important research project.

With very best wishes,