Caring for young adults with life-limiting conditions
21st July 2025
The number of young adults (ages 18–25) living with life-limiting conditions is growing, and they need palliative care that reflects their specific needs. To support this researchers based at the Cicely Saunders Institute used patient reported outcome measures (PROMs) to assess how these individuals are feeling and how their health is affecting their quality of life.
The study reviewed thousands of research papers to find which PROMs are designed or adapted for young adults with life-limiting conditions. Out of 4,922 papers, 35 were relevant and described 68 different PROMs. Most of these focused on young adults with cancer. Very few looked at conditions like complex neurodisability.
Most of the PROMs were originally developed for children or older adults — only seven were made specifically for young adults. Most tools measured only one or two areas of health. Commonly tested features of these tools were their reliability and validity, but none fully met the standards for content quality and consistency.
Conclusion:
The researchers concluded that there’s a clear lack of well-designed, multi-dimensional tools to assess the health and wellbeing of young adults with life-limiting conditions, especially for those without cancer. Future research should adapt or create better tools that are relevant and easy for young adults to understand, and should involve both patients and healthcare professionals in their development.
Chambers RL, Hocaoglu MB, Higginson IJ, Sleeman KE, Fraser LK. Evaluating the measurement properties of patient-reported outcome measures for young adults with life-limiting conditions: A systematic review. Palliat Med. 2025 Jul;39(7):765-791. doi: 10.1177/02692163251340175. Epub 2025 Jun 19. PMID: 40536040; PMCID: PMC12227827.