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A Life Put on Pause: An Exploration of the Health-Related Quality of Life Issues Relevant to Adolescents and Young Adults with Cancer

Sodergren, SC; Husson, O; Rohde, GE; Tomasewska, IM; Vivat, B; Yarom, N; Griffiths, H; (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. Green open access

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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.

Type: Article
Title: A Life Put on Pause: An Exploration of the Health-Related Quality of Life Issues Relevant to Adolescents and Young Adults with Cancer
Open access status: An open access version is available from UCL Discovery
DOI: 10.1089/jayao.2017.0110
Publisher version: https://doi.org/10.1089/jayao.2017.0110
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: health-related quality of life (HRQoL), psychosocial, supportive care
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
URI: https://discovery.ucl.ac.uk/id/eprint/10049427
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