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)

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.

Prevalence of late and long-term effects of cancer (treatment) and use of complementary and alternative medicine in Norway

“…The findings of 83% reporting late and long-term effects from cancer diagnosis and treatment is somewhat higher than what was found in an earlier Norwegian study where 61.5% of the participants reported at least one late effect [87]. The discrepancy might be due to the fact that the latter study was conducted among adolescent and young adult cancer survivors who thanks to their younger age recovered more easily from these effects.…”

Awareness of diagnosis, treatment and risk of late effects in Chinese survivors of childhood cancer in Hong Kong

“…Admittedly, the latter approach might be subjected to inaccurate reporting but it is still recognized to be effective in facilitating collection of health outcomes data in epidemiological studies involving paediatric cancer population. 43 , 44 Despite these limitations, the current study provides evidence to support the development of targeted interventions and facilitate larger‐scale research agendas intended to improve the health and psychosocial outcomes of survivors of childhood cancer in Hong Kong.…”

Adolescent and Young Adult (AYA) Cancer Survivorship Practices: An Overview

“…Altogether, the findings of these studies highlight the urgent need to better understand, screen for, and risk stratify, prevent and/or treat the negative long-term and late effects [16,41,43,64,73,116,117]. Many cancer-related sequelae experienced by AYAs have complex etiologies involving multiple overlapping mechanisms, making them difficult to prevent and treat [16,66,118].…”