Long-term health-related quality of life in young childhood cancer survivors and their parents
Open accessAbstract
PURPOSE: Few studies have investigated the health-related quality of life (HRQoL) of young childhood cancer survivors and their parents. This study describes parent and child cancer survivor HRQoL compared to population norms and identifies factors influencing child and parent HRQoL. METHODS: We recruited parents of survivors who were currently <16 years, and >5 years postdiagnosis. Parents reported on their child's HRQoL (Kidscreen-10), and their own HRQoL (EQ-5D-5L). Parents rated their resilience and fear of cancer recurrence and listed their child's cancer-related late effects. RESULTS: One hundred eighty-two parents of survivors (mean age = 12.4 years old and 9.7 years postdiagnosis) participated. Parent-reported child HRQoL was significantly lower than population norms (48.4 vs. 50.7, p < .009). Parents most commonly reported that their child experienced sadness and loneliness (18.1%). Experiencing more late effects and receiving treatments other than surgery were associated with worse child HRQoL. Parents' average HRQoL was high (0.90) and no different to population norms. However 38.5% of parents reported HRQoL that was clinically meaningfully different from perfect health, and parents experienced more problems with anxiety/depression (43.4%) than population norms (24.7%, p < .0001). Worse child HRQoL, lower parent resilience, and higher fear of recurrence was associated with worse parent HRQoL. CONCLUSIONS: Parents report that young survivors experience small but significant ongoing reductions in HRQoL. While overall mean levels of HRQoL were no different to population norms, a subset of parents reported HRQoL that was clinically meaningfully different from perfect health. Managing young survivors' late effects and improving parents' resilience through survivorship may improve HRQoL in long-term survivorship.
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Long-term survivorship can be a time when the full impact of the childhood cancer diagnosis is fully appreciated and additional supports at this time might be valuable.
“Long-term survivorship can indeed be a time when the full impact of the childhood cancer diagnosis is fully appreciated and additional supports at this time might be valuable [75].”
From Providing psychological support to parents of childhood cancer survivors: ‘cascade’ intervention trial results and lessons for the future (2021) · cites this paper as [75]
The Discussion says parents and young survivors may continue to grapple with the emotional upheaval of diagnosis and treatment during survivorship. The Clinical implications section recommends psychological support as part of long-term follow-up. Neither passage establishes that the full impact of the diagnosis is first or fully appreciated at that time. (LLM, conf=0.83)
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- Authors
- Fardell, J. E., Wakefield, C. E., De Abreu Lourenco, R., Signorelli, C., McCarthy, M., McLoone, J., Osborn, M., Gabriel, M., Anazodo, A., Alvaro, F., Lockwood, L., Walwyn, T., Skeen, J., Tillemans, R., Cohn, R. J., & ANZCHOG Survivorship Group
- Affiliations
- UNSW Sydney (AU)
- Centre for Health Economics Research and Evaluation University of Technology Sydney Haymarket New South Wales Australia
- Royal Children's Hospital (AU)
- Women's and Children's Hospital (AU)
- Children's Hospital at Westmead (AU)
- John Hunter Children's Hospital (AU)
- Children's Health Queensland Hospital and Health Service (AU)
- The University of Western Australia (AU)
- Starship Children's Health (NZ)
- University of Technology Sydney (AU)
- Sydney Children's Hospital (AU)
- Corresponding author
- Fardell, Joanna E.
- ORCID
- Venue
- Pediatric Blood & Cancer
- Publisher
- Wiley
- Published
- 2021-10-04
- Volume
- 68
- Issue
- 12
- Pages
- e29398-e29398
- ISSN
- 1545-5009 (ISSN-L)
- 1545-5017
- OpenAlex
- W3202699693
- Cited by
- 61
- References
- 40
- Citations by year
- 2026: 18 · 2025: 15 · 2024: 10 · 2023: 8 · 2022: 9 · 2021: 1
- FWCI
- 6.92
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Pediatric Blood & Cancer (publishedVersion)
- PubMed (publishedVersion)
- UNSWorks (University of New South Wales, Sydney, Australia) (submittedVersion, cc-by-nc-nd)
- UWA Profiles and Research Repository (UWA) (submittedVersion)
- Adelaide Research & Scholarship (AR&S) (University of Adelaide) (submittedVersion)
- Minerva Access (University of Melbourne) (submittedVersion)
- UTS ePRESS (University of Technology Sydney) (submittedVersion)
- NOVA (University of Newcastle Australia) (submittedVersion)
- Funders
- Australian Government
- Cancer Australia
- Kids' Cancer Project
- Kids Cancer Alliance
- National Health and Medical Research Council (1143767)
- Cancer Council NSW (PG16‐02)
- Topics
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Social Sciences › Sociology and Political Science › Family Support in Illness
- Keywords
- childhood cancer survivors, health-related quality of life, parents of cancer survivors, long-term survivorship, late effects of cancer treatment, fear of cancer recurrence, parental resilience, loneliness, pediatric oncology
- MeSH terms
- Cancer Survivors, Child, Humans, Neoplasms, Parents, Quality of Life, Surveys and Questionnaires, Survivors
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