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Development of health-related quality of life and symptoms of anxiety and depression among persons diagnosed with cancer during adolescence: a 10-year follow-up study
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
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2016 (English)In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, no 5, 582-589 p.Article in journal (Refereed) Published
Abstract [en]

Objective: The main aim was to investigate the development of health-related quality of life (HRQOL) and symptoms of anxiety and depression in a cohort diagnosed with cancer during adolescence from shortly after up to 10 years after diagnosis.

Methods: Participants (n = 61) completed the SF-36 and the HADS shortly; six, 12, and 18 months; and two, three, four, and 10 years (n = 28) after diagnosis. Polynomial change trajectories were used to model development.

Results: Polynomial change trajectories showed an initial increase which abated over time into a decrease which abated over time for the SF-36 subscales Mental Health and Vitality; an initial decline which abated over time into an increase for HADS anxiety; and an initial decline which abated over time into an increase which abated over time for HADS depression. The SF-36 mental component summary showed no change from two to 10 years after diagnosis whereas the SF-36 physical component summary showed an increase from two years after diagnosis which declined over time. Ten years after diagnosis 29% reported possible anxiety.

Conclusions: Development of HRQOL and symptoms of anxiety and depression appears to be nonlinear among persons diagnosed with cancer during adolescence. Well into permanent survivorship an increase in symptoms of anxiety is shown and approximately a third of the participants report possible anxiety. The findings indicate the need for: studies designed to pinpoint the times of highest psychological risk, clinical follow-up focusing on psychological problems, and development of effective psychological interventions for survivors of adolescent cancer

Place, publisher, year, edition, pages
2016. Vol. 25, no 5, 582-589 p.
National Category
Cancer and Oncology Psychology (excluding Applied Psychology)
Identifiers
URN: urn:nbn:se:uu:diva-262514DOI: 10.1002/pon.3965ISI: 000374494700014PubMedID: 26361085OAI: oai:DiVA.org:uu-262514DiVA: diva2:854171
Funder
Swedish Cancer Society, 99 0347 01 0235 02 0690 03 0227 05 0189 10 0649 11 0649 12 0649Swedish Childhood Cancer Foundation, 1999/021 02/002 04/011 07/044 10/086
Available from: 2015-09-16 Created: 2015-09-16 Last updated: 2017-12-04Bibliographically approved
In thesis
1. Cancer during adolescence: Psychological consequences and development of psychological treatment
Open this publication in new window or tab >>Cancer during adolescence: Psychological consequences and development of psychological treatment
2017 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of the present thesis was to examine long-term psychological distress following cancer during adolescence and to develop a tailored psychological intervention to reduce cancer-related distress experienced by young survivors of adolescent cancer that was feasible and acceptable.

Study I adopted a longitudinal design, assessing health-related quality of life (HRQOL) and symptoms of anxiety and depression among adolescents diagnosed with cancer from shortly after diagnosis (n=61) up to 10 years after diagnosis (n=28). Findings suggest that development of HRQOL and anxiety and depression is not linear and whilst the majority adjust well, a subgroup report long-term elevated distress. In Study II, experiences of cancer-related psychological distress were explored using unstructured interviews. Participants described cancer treatment as a mental challenge, felt marked and hindered by the cancer experience, and struggled with feelings of inadequacy and insecurity, existential issues, and difficulties handling emotions. Study III was a preliminary investigation of individualised cognitive behavioural therapy (CBT), alongside the identification and conceptualisation of cancer-related concerns using cognitive-behavioural theory. Significant difficulties with recruitment were encountered. Participants reported cancer-related concerns conceptualised as social avoidance, fear and avoidance of emotions and bodily symptoms, imbalance in activity, and worry and rumination. In Study IV, the acceptability and feasibility of an internet-administered CBT based self-help intervention (ICBT) for young persons diagnosed with cancer during adolescence was examined using an uncontrolled design and embedded process evaluation. The study protocol for Study IV was included in this thesis along with preliminary findings demonstrating significant difficulties with recruitment.

Overall, findings suggest that whilst the majority of survivors of adolescent cancer adjust well over time a subgroup report elevated levels of distress and a range of distressing cancer-related experiences. A number of cancer-related difficulties were identified in Study II and III, which may be used to inform the development of future psychological treatments for the population. Preliminary investigation of the psychological interventions examined within this thesis further highlights the need for future development work to enhance the feasibility and acceptability of psychological support for the population. 

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2017. 75 p.
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1393
Keyword
cancer and oncology, adolescents, young adults, survivorship, anxiety, depression, psychological distress, health-related quality of life, cognitive behaviour therapy, guided self-help
National Category
Psychology
Research subject
Medical Science; Psychology
Identifiers
urn:nbn:se:uu:diva-330130 (URN)978-91-513-0145-7 (ISBN)
Public defence
2017-12-15, Auditorium minus, Museum Gustavianum, Akademigatan 3, Uppsala, 13:15 (Swedish)
Opponent
Supervisors
Funder
U‐Care: Better Psychosocial Care at Lower Cost? Evidence-based assessment and Psychosocial Care via Internet, a Swedish ExampleSwedish Childhood Cancer Foundation, 10/086, 12/028, 2013-0039, 2016-0004Swedish Cancer Society, 12 0649, 13 0457
Available from: 2017-11-23 Created: 2017-10-31 Last updated: 2017-11-23

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