Taylor, R.M. orcid.org/0000-0002-0853-0925, Whelan, J.S. orcid.org/0000-0001-6793-5722, Barber, J.A. orcid.org/0000-0001-5762-762X et al. (5 more authors) (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, 13 (3). 492 -501. ISSN 2156-5333
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.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2024, Mary Ann Liebert, Inc., publishers. This is the accepted version of the following article: Taylor, R.M. , Whelan, J.S. , Barber, J.A. et al. (5 more authors) (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, 13 (3). 492 -501. ISSN 2156-5333, which has now been formally published in final form at the Journal of Adolescent and Young Adult Oncology at https://doi.org/10.1089/jayao.2023.0141. This version of the article may be used for non-commercial purposes in accordance with the Mary Ann Liebert, Inc., publishers’ self-archiving terms and conditions. |
Keywords: | BRIGHTLIGHT; anxiety; depression; health status; illness perception; social support; specialist care |
Dates: |
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Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Leeds Institute of Medical Research (LIMR) > Division of Oncology The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Leeds Institute of Cardiovascular and Metabolic Medicine (LICAMM) > Clinical & Population Science Dept (Leeds) |
Funding Information: | Funder Grant number NIHR National Inst Health Research TYA CAN COHORT STY G569 EU - European Union 261747 EU - European Union 261747 Teenage Cancer Trust NO EXT REF GIVEN ESRC (Economic and Social Research Council) ES/S00565X/1 Teenage Cancer Trust No Ext Ref Given |
Depositing User: | Symplectic Publications |
Date Deposited: | 14 Feb 2024 16:01 |
Last Modified: | 21 Aug 2024 13:16 |
Status: | Published |
Publisher: | Mary Ann Liebert |
Identification Number: | 10.1089/jayao.2023.0141 |
Related URLs: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:208929 |