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