Last week we announced a new study that looks to produce a patient-reported outcome measure (PROM) of cardiac arrest survivorship and health-related quality of life. This is the CASHQoL study and is an international collaborative effort run by Warwick Medical School.
What is a patient-reported outcome measure?
These are tools measuring outcomes that matter to patients, more specifically reflecting patients’ or key supporters’ perspectives on the impact of the condition on their lives and how illness is experienced eg, ‘can I now climb my stairs?’, rather than ‘has my ejection fraction improved?’ These tools aim to capture the patient’s perspective, so patient involvement is required in the development of patient-reported outcome measures (PROMs). When it comes to the subjective experience of their condition, patients and/or their key supporters can be considered as ‘experts’ and they can bring value in conversations/consultations and in defining the importance of commonly used outcomes, such as length of hospital stay.
Why an SCA-based PROM?
Currently, there is no common measure of how well cardiac arrest survivors do post-discharge and consequently, the level of care varies widely across the country and beyond. A PROM can help improve the understanding of what makes good survivorship and in turn help the policy and guideline makers put in place the requirements to make SCA recovery the best for everyone regardless of where they are.
This first step is a call for volunteers and is an important stage as it will help shape what comes next. If you’re interested in joining in then read on to find out how you can help future survivors and their key supporters.
What’s the purpose of the study?
We are developing a questionnaire about life after cardiac arrest. We would like to
talk to people who have survived a cardiac arrest to better understand what life is
like on their recovery journey. This will help us to ensure that the things that really
matter are included in the questionnaire.
Who do you need?
- People who have experienced a cardiac arrest within the last 3 years
- A family member or friend who is happy to talk about the experience of the person who survived a cardiac arrest
- If you are aged 18 years or older
- Be in the UK
- You will be invited to talk to a researcher about the recovery journey
- If you would like a family member/friend with you, please just us know
- You will need access to a telephone or computer
Will this be confidential?
- Yes – all information you provide will be treated as confidential
- You will not be identified in the reporting of this study
How do I find out more?
After our first meet-up in February 2015, I realised I was not alone. It was the first time since my cardiac arrest the previous year that I had spoken face-to-face with someone who had experienced what I had. This was also true for my wife, who also happened to be my lifesaver. From that meet-up, the idea of SCA UK was born. Since then, we have achieved a considerable amount, primarily providing information, resources and support to others in a similar situation but also raising the profile of survivorship and the need for better post-discharge care. We are starting to get traction in this, and with the formation of the charity, I genuinely believe we have a bright future ahead and will make a significant difference in the lives of many who join our ranks.