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