A life put on pause: an exploration of the health-related quality of life issues relevant to adolescents and young adults with cancer
A life put on pause: an exploration of the health-related quality of life issues relevant to adolescents and young adults with cancer
Purpose: in recent years, the assessment of health-related quality of life (HRQoL) has been recognized as particularly informative to health care 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 6 countries.
Results: the most prevalent cancers presented were leukemia (n=12) and lymphoma (n=8). AYAs’ descriptive accounts were analysed 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.
453-464
Sodergren, S.
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Husson, O.
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Tomasewska, I.M.
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Vivat, B.
418f3861-ef8d-449a-bca5-c5b4dc888c33
Yarom, N.
e0fdbd01-a531-4979-aecc-7c3396bd65fb
Griffiths, H.
70eb2bea-383a-4a10-bd01-826bc07f1a11
Darlington, A.-S.
472fcfc9-160b-4344-8113-8dd8760ff962
1 August 2018
Sodergren, S.
d66fc3fa-2c98-403d-8ae5-410ef95de46e
Husson, O.
445510d4-92ee-4795-9fef-b92c82810484
Tomasewska, I.M.
42b2c78a-a715-4f23-8efb-3121f9eb3c37
Vivat, B.
418f3861-ef8d-449a-bca5-c5b4dc888c33
Yarom, N.
e0fdbd01-a531-4979-aecc-7c3396bd65fb
Griffiths, H.
70eb2bea-383a-4a10-bd01-826bc07f1a11
Darlington, A.-S.
472fcfc9-160b-4344-8113-8dd8760ff962
Sodergren, S., Husson, O., Tomasewska, I.M., Vivat, B., Yarom, N., Griffiths, H. and Darlington, A.-S.
(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, .
(doi:10.1089/jayao.2017.0110).
Abstract
Purpose: in recent years, the assessment of health-related quality of life (HRQoL) has been recognized as particularly informative to health care 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 6 countries.
Results: the most prevalent cancers presented were leukemia (n=12) and lymphoma (n=8). AYAs’ descriptive accounts were analysed 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.
Text
A life put on pause: An exploration of the health-related quality of life issues relevant to adolescents and young adults with cancer
- Accepted Manuscript
More information
Accepted/In Press date: 6 February 2018
e-pub ahead of print date: 22 March 2018
Published date: 1 August 2018
Identifiers
Local EPrints ID: 418254
URI: http://eprints.soton.ac.uk/id/eprint/418254
PURE UUID: 1cc42911-d4a7-4002-ab82-d201be78d782
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Date deposited: 26 Feb 2018 17:30
Last modified: 16 Mar 2024 06:15
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Contributors
Author:
O. Husson
Author:
I.M. Tomasewska
Author:
B. Vivat
Author:
N. Yarom
Author:
H. Griffiths
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