# What are the symptoms and concerns of young adults living with life-limiting conditions and how well are they captured by patient reported outcome measures? A mixed-methods systematic review and framework synthesis

## TL;DR

This study reviews the symptoms and concerns of young adults with life-limiting conditions and finds that current patient-reported outcome measures do not adequately capture their holistic needs.

## Contribution

The study provides a conceptual framework to guide the development of age-specific, holistic outcome measures for this population.

## Key findings

- Young adults report physical, psychological, social, spiritual, and healthcare-related concerns.
- Most patient-reported outcome measures used are not holistic or age-specific.
- A conceptual framework is proposed to improve outcome measure design for this group.

## Abstract

Internationally the number of young adults living with life-limiting conditions is increasing. Holistic concerns of this population have not been reviewed. It is unclear whether patient reported outcome measures used in this population capture their symptoms and concerns.

To: (1) identify and synthesise the symptoms and concerns of young adults (aged 18–39) living with life-limiting conditions; (2) evaluate the content validity of patient reported outcome measures used in this population.

A mixed-methods systematic review and framework synthesis. PROSPERO ID CRD42024565986.

MEDLINE, EMBASE, Cochrane, CINAHL, PsycINFO, AMED from inception to 04/07/24.

A total of 16552 articles identified, 100 included. Among these, 34 studies addressed aim 1. Of these 18 were qualitative, 12 mixed methods, 3 quantitative, and 1 used quantitative and qualitative methodologies. 66 quantitative studies addressed aim 2. They used 65 patient reported outcome measures, and 13 questionnaires to capture pre-defined symptoms and concerns. Symptoms and concerns included: physical (fertility and reproductive health, sexual concerns), psychological (embarrassment, suicidal thoughts and body image), social (loss of independence, balancing roles as a parent, missing out on events), spiritual concerns (uncertain future, life on hold), and quality of healthcare concerns (age-specific caring environments, role of partners as caregivers, involvement in decisions). Of the patient reported outcome measures identified as used with young adults, few were holistic.

This review highlights the need for holistic, age-specific person-centred outcome measures for young adults living with life-limiting conditions. We present a conceptual framework of symptoms and concerns that can be used to develop or modify existing patient reported outcome measures for this population.