eprintid: 10049427 rev_number: 23 eprint_status: archive userid: 608 dir: disk0/10/04/94/27 datestamp: 2018-06-19 14:31:18 lastmod: 2021-10-05 00:42:15 status_changed: 2018-06-19 14:31:18 type: article metadata_visibility: show creators_name: Sodergren, SC creators_name: Husson, O creators_name: Rohde, GE creators_name: Tomasewska, IM creators_name: Vivat, B creators_name: Yarom, N creators_name: Griffiths, H creators_name: Darlington, A-S title: A Life Put on Pause: An Exploration of the Health-Related Quality of Life Issues Relevant to Adolescents and Young Adults with Cancer ispublished: pub divisions: UCL divisions: B02 divisions: C07 divisions: D79 keywords: health-related quality of life (HRQoL), psychosocial, supportive 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 recent years, the assessment of health-related quality of life (HRQoL) has been recognized as particularly informative to healthcare providers. For adolescents and young adults (AYAs), the impact of a cancer diagnosis and subsequent treatment is likely to be distinct from other age groups given the unique and complex physical and psychosocial challenges of this developmental phase. The objective of this study was to capture the HRQoL issues described by AYAs with cancer using thematic analysis.Methods: Semi-structured interviews were carried out with 45 AYAs aged 14–25 years from six countries. RESULTS: The most prevalent cancers presented were leukemia (n = 12) and lymphoma (n = 8). AYAs' descriptive accounts were analyzed and 12 categories identified: Symptoms (i.e., pain, nausea, vomiting) (84% AYAs); activity limitations (education, leisure time activities) (87%); disrupted life plans (29%); social (loss of friends, family life) (91%); emotional (depression, anxiety) (64%); body image (conscious of changed appearance) (36%); self-appraisals (greater maturity, braver) (47%); outlook on life (altered priorities, increased motivation to achieve) (33%); lifestyle (restricted diet, avoidance of infections) (18%), treatment-related (absence of age-appropriate information, treatment burden) (31%); fertility (24%); and financial concerns (13%). CONCLUSIONS: A wide spectrum of both negative and positive issues were described. Several of these issues, such as disrupted life plans and difficulty establishing romantic relationships, are likely to be more common to AYAs with cancer and might not be captured by existing HRQoL measures. Recognition of these issues and finding ways of addressing them should be seen as an essential component of AYA-tailored cancer care. date: 2018-08 date_type: published publisher: MARY ANN LIEBERT, INC official_url: https://doi.org/10.1089/jayao.2017.0110 oa_status: green full_text_type: other language: eng primo: open primo_central: open_green verified: verified_manual elements_id: 1544556 doi: 10.1089/jayao.2017.0110 lyricists_name: Vivat, Bella lyricists_id: BVIVA98 actors_name: Vivat, Bella actors_id: BVIVA98 actors_role: owner full_text_status: public publication: Journal of Adolescent and Young Adult Oncology volume: 7 number: 4 pagerange: 453-464 pages: 12 issn: 2156-535X citation: Sodergren, SC; Husson, O; Rohde, GE; Tomasewska, IM; Vivat, B; Yarom, N; Griffiths, H; Sodergren, SC; Husson, O; Rohde, GE; Tomasewska, IM; Vivat, B; Yarom, N; Griffiths, H; Darlington, A-S; - view fewer <#> (2018) A Life Put on Pause: An Exploration of the Health-Related Quality of Life Issues Relevant to Adolescents and Young Adults with Cancer. Journal of Adolescent and Young Adult Oncology , 7 (4) pp. 453-464. 10.1089/jayao.2017.0110 <https://doi.org/10.1089/jayao.2017.0110>. Green open access document_url: https://discovery.ucl.ac.uk/id/eprint/10049427/1/JAYAO%20Accepted%20A%20Life%20put%20on%20Pause%20Sodergren%20et%20al.pdf