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,E Ruud,C S Rueegg,Hanne C Lie,J H Loge,C E Kiserud,S D Fosså

doi:10.1007/s00520-020-05790-6

A V Mellblom, E Ruud + Show 5 more

Open Access

https://doi.org/10.1007/s00520-020-05790-6

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Abstract

PurposeThe 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.MethodsSurvivors 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.ResultsOf 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.ConclusionsThe 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.

Highlights

The growing population of childhood, adolescent, and young adult cancer survivors (CAYACS) is at risk of significant cumulative disease burden due to late effects of the cancer and/or the treatment [1,2,3,4]
As many survivors were unlikely to have received information about late effects from their clinicians given the long time since diagnosis, we provided a brief explanation of late effects in the questionnaire before the list of late effects and follow-up care
Responders were more likely to be females, slightly older at diagnosis and survey, longer time since diagnosis, and be diagnosed with BC, colorectal cancer (CRC), non-Hodgkin lymphoma (NHL), or LEUK than nonresponders

Summary

Introduction

The growing population of childhood, adolescent, and young adult cancer survivors (CAYACS) is at risk of significant cumulative disease burden due to late effects of the cancer and/or the treatment [1,2,3,4]. Occurrence of late effects in the adolescent and young adult cancer survivor population is less studied than in childhood cancer survivors, but the available literature suggests similar trends [12]. Risk-adapted, long-term or life-long, follow-up care is recommended [13,14,15,16,17,18], research documenting the effect of such care is currently scarce [18]. Attendance rates tend to be low due to high rates of disengagement from or being lost to long-term follow-up among young cancer survivors [23,24,25,26]

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