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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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aims:<\/jats:title>\n                    <jats:p>To: (1) identify and synthesise the symptoms and concerns of young adults (aged 18\u201339) living with life-limiting conditions; (2) evaluate the content validity of patient reported outcome measures used in this population.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design:<\/jats:title>\n                    <jats:p>A mixed-methods systematic review and framework synthesis. PROSPERO ID CRD42024565986.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Data sources:<\/jats:title>\n                    <jats:p>MEDLINE, EMBASE, Cochrane, CINAHL, PsycINFO, AMED from inception to 04\/07\/24.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/02692163251405370","type":"journal-article","created":{"date-parts":[[2026,1,13]],"date-time":"2026-01-13T09:41:40Z","timestamp":1768297300000},"page":"314-332","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["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? 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