eprintid: 10187021 rev_number: 10 eprint_status: archive userid: 699 dir: disk0/10/18/70/21 datestamp: 2024-02-13 14:35:08 lastmod: 2024-10-11 14:32:41 status_changed: 2024-02-13 14:35:08 type: article metadata_visibility: show sword_depositor: 699 creators_name: Taylor, Rachel M creators_name: Whelan, Jeremy S creators_name: Barber, Julie A creators_name: Alvarez-Galvez, Javier creators_name: Feltbower, Richard G creators_name: Gibson, Faith creators_name: Stark, Dan P creators_name: Fern, Lorna A title: The Impact of Specialist Care on Teenage and Young Adult Patient-Reported Outcomes in England: A BRIGHTLIGHT Study ispublished: inpress subjects: GOSH subjects: UCH divisions: UCL divisions: B02 divisions: B04 divisions: C10 divisions: C06 divisions: D19 divisions: D16 divisions: F61 divisions: G88 keywords: anxiety, BRIGHTLIGHT, depression, health status, illness perception, social support, specialist care note: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions. abstract: Purpose: In England, health care policy promotes specialized age-appropriate cancer services for teenagers and young adults (TYA), for those aged 13-24 years at diagnosis. Specialist Principal Treatment Centers (PTCs) provide enhanced age-specific care for TYA, although many still receive all or some of their care in adult or children's cancer services. Our aim was to determine the patient-reported outcomes associated with TYA-PTC based care. Methods: We conducted a multicenter cohort study, recruiting 1114 TYA aged 13-24 years at diagnosis. Data collection involved a bespoke survey at 6,12,18, 24, and 36 months after diagnosis. Confounder adjusted analyses of perceived social support, illness perception, anxiety and depression, and health status, compared patients receiving NO-TYA-PTC care with those receiving ALL-TYA-PTC and SOME-TYA-PTC care. Results: Eight hundred and thirty completed the first survey. There was no difference in perceived social support, anxiety, or depression between the three categories of care. Significantly higher illness perception was observed in the ALL-TYA-PTC and SOME-TYA-PTC group compared to the NO-TYA-PTC group, (adjusted difference in mean (ADM) score on Brief Illness Perception scale 2.28 (95% confidence intervals [CI] 0.48-4.09) and 2.93 [1.27-4.59], respectively, p = 0.002). Similarly, health status was significantly better in the NO-TYA-PTC (ALL-TYA-PTC: ADM -0.011 [95%CI -0.046 to 0.024] and SOME-TYA-PTC: -0.054 [-0.086 to -0.023]; p = 0.006). Conclusion: The reason for the difference in perceived health status is unclear. TYA who accessed a TYA-PTC (all or some care) had higher perceived illness. This may reflect greater education and promotion of self-care by health care professionals in TYA units. date: 2024-01-30 date_type: published publisher: Mary Ann Liebert official_url: http://dx.doi.org/10.1089/jayao.2023.0141 oa_status: green full_text_type: other language: eng primo: open primo_central: open_green verified: verified_manual elements_id: 2215806 doi: 10.1089/jayao.2023.0141 medium: Print-Electronic lyricists_name: Whelan, Jeremy lyricists_name: Barber, Julie lyricists_name: Taylor, Rachel Margaret lyricists_id: JSWHE70 lyricists_id: JBARB68 lyricists_id: RMTAY31 actors_name: Taylor, Rachel Margaret actors_id: RMTAY31 actors_role: owner funding_acknowledgements: RP-PG-1209-10013 [National Institute for Health and Care Research (NIHR)under its Programme Grants for Applied Research Programme]; [Teenage Cancer Trust]; [National Institute for Health and Care Research University College London Hospitals Biomedical Research Centre] full_text_status: public publication: Journal of Adolescent and Young Adult Oncology pages: 10 event_location: United States issn: 2156-535X citation: Taylor, Rachel M; Whelan, Jeremy S; Barber, Julie A; Alvarez-Galvez, Javier; Feltbower, Richard G; Gibson, Faith; Stark, Dan P; Taylor, Rachel M; Whelan, Jeremy S; Barber, Julie A; Alvarez-Galvez, Javier; Feltbower, Richard G; Gibson, Faith; Stark, Dan P; Fern, Lorna A; - view fewer <#> (2024) The Impact of Specialist Care on Teenage and Young Adult Patient-Reported Outcomes in England: A BRIGHTLIGHT Study. Journal of Adolescent and Young Adult Oncology 10.1089/jayao.2023.0141 <https://doi.org/10.1089/jayao.2023.0141>. (In press). Green open access document_url: https://discovery.ucl.ac.uk/id/eprint/10187021/1/JAYAO-2023-0141.R1_Proof_hi.pdf