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 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 into young adults living with non-cancer conditions, though their needs are equally great. Young adults require age-specific palliative care that is responsive to their needs and preferences at the end of life. To capture and identify these needs we can use patient reported outcomes.
A patient reported outcome (PROM) is “any report of the status of a patient’s health condition that comes directly from the patient without interpretation by a clinician or anyone else” [2]. These are often captured using self-report questionnaires known as patient reported outcome measures. They facilitate patient involvement in their care, allowing patients to report their needs and symptoms to health and social care professionals, providing an opportunity to address unmet needs, leading to improved care [3].
The aim of the project is to understand the needs and symptoms of young adults living with life-limiting conditions. The researchers want to establish to what extent PROMS can be used to support the person-centred care of this population.
A systematic review will gather existing evidence on the needs and symptoms of young adults living with life-limiting conditions and identify research gaps.
A patient and public involvement (PPI) group of young adults (aged 18-25) living with life-limiting conditions have helped to shape the aims and objectives of this PhD. They will be collaborated with throughout the project to ensure it meets their needs.
This project is funded by Cicely Saunders International. It began in March 2024 and is expected to complete in February 2027.
Read more about the patients and public involvement in this research in this co-produced blog.
Read more about the palliative and end of life care research at ARC South London.
[1] Fraser LK, Gibson-Smith D, Jarvis S, Norman P, Parslow RC. Estimating the current and future prevalence of life-limiting conditions in children in England. Palliative Medicine. 2020 Dec 15;35(9):026921632097530
[2] GOV.UK. Patient-reported outcomes and experiences study [Internet]. GOV.UK. 2020. Available from: https://www.gov.uk/guidance/patient-reported-outcomes-and-experiences-study
[3] Guidance for Industry Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims [Internet]. 2009. Available from: https://www.fda.gov/media/77832/download
[4] Black N. Patient reported outcome measures could help transform healthcare. BMJ (Clinical research ed) [Internet]. 2013 Jan 28;346:f167. Available from: https://www.ncbi.nlm.nih.gov/pubmed/23358487
