About the study

Rachel Chambers, King's College London

In the UK, the number of young adults (aged 18-25) diagnosed with a life-limiting condition increased from 18,522 in 2009/2010 to 25,766 in 2017/2018, an increase of nearly 40% [1]. By 2030, the prevalence of young adults aged 14-25 living with a life-limiting condition is projected to be between 46.0 and 62.2 per 10,000 [1].

The needs of young adults (aged 18-25) are often different to the needs of children and older adults living with life-limiting conditions. Their needs continue to grow and increase in complexity, but most research focuses on young adults living with cancer. There is little research with young adults living with non-cancer conditions even though their needs are equally great.

To address this gap, the aim of Rachel’s NIHR Pre-Doctoral Fellowship and Cicely Saunders International PhD Training Fellowship is to understand the needs and symptoms of young adults living with life-limiting conditions and to what extent patient reported outcome measures can be used to support their person-centred care. 

Funding from King’s Public Engagement Small Grants Scheme enabled Rachel to build a panel of young adults (aged 18-25) living with life-limiting conditions. This opened a dialogue between young adults and researchers about the experience of living with a life-limiting condition. 

 

Together the panel have been crucial in identifying key research questions and shaping the design and delivery of the project. Patient and public involvement members shared their own experience and unmet needs, recognising that some of the needs were not being captured by existing patient reported outcome measures.

Rachel chambers

Rachel Chambers, PhD training fellow, King's College London

These discussions highlighted a gap in the existing literature in understanding the needs and symptoms of young adults living with life-limiting conditions beyond cancer (the focus of most research). By sharing personal experiences and unmet needs, the panel supported Rachel in the design and development of her PhD proposal, which (because of these reflections) now aims to identify the needs and symptoms of young adults living with a range of life-limiting conditions and how these needs can be captured using patient reported outcome measures.

Rachel has now completed her NIHR Pre-Doctoral Fellowship and is in the first year of her Cicely Saunders International PhD Training Fellowship. The panel continue to meet regularly. The group hope that the findings from this project will shed light on unmet needs and have significant implications for understanding how these needs can be met using patient reported outcome measures to support patient-centred care. 

 

Motivation and experience of being involved

Sam Cornelius-Light, patient and public involvement member

Before joining this project, I had neither come across or heard of patient and public involvement (PPI). I was intrigued and was keen to find out more. As well as general curiosity, I was aware of the power that co-production and shared lived experience can create, especially with regards to health and social care research.

I really enjoyed being part of this project as I felt my views and comments were valued and fully taken into account by the researchers, especially with regard to shaping the research methods, processes and outcomes.

Through taking part in the project, it made me realise how crucial it is to have patients and the general public involved in research, especially as it is them who it is likely to impact upon the most. It was interesting to hear about the Patient Reported Outcome measures and how these don’t really cater for young disabled adults. Similarly, another eye-opener was hearing about significant gaps in some research areas.

Sam Cornelius-Light

Sam Cornelius-Light, patient and public involvement member

I enjoyed being able to share my feedback on both of these aspects and how it may be used to fill in these data gaps.  I am already looking forward to taking part in another PPI project!
 

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References 

[1] Gibson-Smith D, Jarvis S, Norman P, et al. Making every young person count: estimating current and future prevalence of young people with life-limiting and life-threatening conditions in England. 2021. University of York, York, UK

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