“Forewarned and forearmed”: Long-term childhood cancer survivors’ and parents’ information needs and implications for survivorship models of care
Open accessAbstract
Objective This mixed-method study assessed 1) survivors' and parents' information needs; and 2) associations between unmet information needs and clinical and socio-demographic characteristics.Methods Stage 1: CCS and parents of CCS, >5years post-diagnosis completed a questionnaire on information needs, overall health and perceived risk. Predictors for unmet information needs were assessed by multivariable regression. Stage 2: participants were interviewed in-depth on these topics.Results Questionnaires were completed by 485 participants comprising 322 survivors (mean age: 26.7years, SD=7.9; time since diagnosis: 19.7years, SD=8.8) and 163 parents (child age: 12.9years, SD=2.4; time since diagnosis: 9.7years, SD=2.3), and complemented by 70 interviews. Survivors reported unmet information needs about late effects (57.5%) and parents for fertility issues (62.5%). Survivors had more unmet needs for medical information whereas parents had significantly more regarding sexual issues and lifestyle. Being a parent (p=0.001), dissatisfaction with follow-up care (p=0.003), lower overall health (p=0.014), higher perceived risk of late effects (p<0.001), and greater anxiety/depression (p<0.001) were significantly associated with more unmet needs.Conclusion Unmet information needs were common for survivors and parents of CCS.Practice implications Future efforts towards tailoring information on potential late effects, healthy lifestyles and follow-up care may help to address unmet information needs.
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Families in rural or remote settings are at greatest risk of poor outcomes.
“placing them at greatest risk of poor outcomes [12,13].”
From Providing psychological support to parents of childhood cancer survivors: ‘cascade’ intervention trial results and lessons for the future (2021) · cites this paper as [13]
The participant table (p. 27) lists rural residence, but the paper does not link it to poor outcomes or identify rural or remote families as being at greatest risk. The Discussion (p. 18) instead reports predictors of unmet information needs; searches for rural or remote residence and poor outcomes found no passage establishing the claim. (LLM, conf=0.75)
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References 37 · Cited by 95
- Authors
- Vetsch, J., Fardell, J. E., Wakefield, C. E., Signorelli, C., Michel, G., McLoone, J. K., Walwyn, T., Tapp, H., Truscott, J., & Cohn, R. J.
- Affiliations
- University of Lucerne (CH)
- UNSW Sydney (AU)
- Princess Margaret Hospital for Children (AU)
- Women's and Children's Hospital (AU)
- Christchurch Hospital (NZ)
- Corresponding author
- Wakefield, Claire E.
- ORCID
- Venue
- Patient Education and Counseling
- Publisher
- Elsevier BV
- Published
- 2017-02
- Volume
- 100
- Issue
- 2
- Pages
- 355-363
- ISSN
- 0738-3991 (ISSN-L)
- OpenAlex
- W2523695685
- Cited by
- 95
- References
- 37
- Citations by year
- 2026: 6 · 2025: 13 · 2024: 6 · 2023: 9 · 2022: 7 · 2021: 11 · 2020: 9 · 2019: 12 · 2018: 14 · 2017: 7 · 2016: 1
- FWCI
- 13.17
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- Locations
- Patient Education and Counseling (acceptedVersion)
- PubMed (publishedVersion)
- UNSWorks (UNSW Sydney) (submittedVersion, cc-by-nc-nd)
- Funders
- Kids Cancer Alliance
- Cancer Institute of NSW translational research grant
- Swiss National Science Foundation (P1LUP3_162120)
- Kids Cancer Project
- Early Career Development Award
- Cancer Institute NSW
- Kids with Cancer Foundation
- Topics
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Acute Lymphoblastic Leukemia research
- Keywords
- childhood cancer survivors, unmet information needs, late effects of cancer treatment, fertility concerns, survivorship care models, risk perception, anxiety and depression, overall health, sexual health
- MeSH terms
- Cancer Survivors, Survivorship, Adult, Cross-Sectional Studies, Delivery of Health Care, Emotions, Female, Health Services Needs and Demand, Humans, Information Services, Male, Middle Aged, Neoplasms, Parents, Quality of Life, Needs Assessment
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