Self-reported late effects and long-term follow-up care among 1889 long-term Norwegian Childhood, Adolescent, and Young
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ORIGINAL ARTICLE
Self-reported late effects and long-term follow-up care among 1889 long-term Norwegian Childhood, Adolescent, and Young Adult Cancer Survivors (the NOR-CAYACS study) A. V. Mellblom 1 & C. E. Kiserud 2 & C. S. Rueegg 3 & E. Ruud 4,5 & J. H. Loge 1 & S. D. Fosså 2 & Hanne C. Lie 1,2 Received: 22 June 2020 / Accepted: 18 September 2020 # The Author(s) 2020
Abstract Purpose The majority of childhood, adolescent, and young adult cancer survivors (CAYACS) are at risk of late effects but may not receive long-term follow-up care for these. Here, we investigated (1) self-reported late effects, (2) long-term follow-up care, and (3) factors associated with receiving follow-up care in a population-based sample of Norwegian long-term CAYACS. Methods Survivors were identified by the Cancer Registry of Norway. All > 5-year survivors diagnosed between 1985 and 2009 with childhood cancer (CCS, 0–18 years old, excluding CNS), breast cancer (BC, stages I–III), colorectal cancer (CRC), leukemias (LEUK), non-Hodgkin lymphoma (NHL), or malignant melanoma (MM) at age 19–39 years were mailed a questionnaire (NOR-CAYACS study). Descriptive statistics and logistic regression models were used to analyze occurrence of late effects, long-term follow-up care for these, and associated factors. Results Of 2104 responding survivors, 1889 were eligible for analyses. Of these, 68% were females, with a mean age of 43 years at survey, on average 17 years since diagnosis, and diagnosed with CCS (31%), BC (26%), CRC (8%), NHL (12%), LEUK (7%), and MM (16%). Overall, 61.5% reported the experience of at least one late effect, the most common being concentration/memory problems (28.1%) and fatigue (25.2%). Sixty-nine percent reported not having received long-term follow-up care focusing on late effects. Lower age at survey (p = 0.001), higher education (p = 0.012), and increasing number of late effects (p = < 0.001) were associated with increased likelihood of follow-up care in the multivariate model. Conclusions The majority of survivors reported at least one late effect, but not receiving specific follow-up care for these. This indicates a need for structured models of long-term follow-up to ensure adequate access to care. Keywords Late effects . Follow-up care . Childhood cancer survivors . Adolescent and young adult cancer survivors Electronic supplementary material The online version of this article (https://doi.org/10.1007/s00520-020-05790-6) contains supplementary material, which is available to authorized users. * Hanne C. Lie [email protected] 1
Department of Behavioural Medicine, Institute of Basic Medical Sciences, Faculty of Medicine, University of Oslo, P.B. 1111, 0317 Oslo, Norway
2
National Resource Centre for Late Effects after Cancer Treatment, Oslo University Hospital, Radiumhospitalet, Oslo, Norway
3
Oslo Centre for Biostatistics and Epidemiology, Oslo University Hospital, Oslo, Norway
4
Department of Pediatric Haematology and Oncology, Division for Paediatric and Adolescent Medicine, Oslo University Hospit
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