Self-reported and Record-collected Late Effects in Long-term Survivors of Childhood Cancer: A Population-based Cohort Study of the Childhood Cancer Registry of the Rhône-Alpes Region (ARCERRA)

Abstract

The disparity between reports of late effects by survivors and medical records underscores the need for better communication between survivors and their health care providers. It is important to recognize the potential for bias from both under- and over-reporting in studies based only on survivor self-report. More thorough observation of late effects among survivors of childhood cancer might result from the implementation of a late-effects clinic.

Participation rates of childhood cancer survivors to self-administered questionnaires: a systematic review

“…), two studies covered three topics (median participation rate 47.5%, range 45–50%) (Casagranda et al . , Gianinazzi et al . 2014a), two studies covered four topics (median participation rate 86.5%, range 82–91%) (Mertens et al .…”

Registration of childhood cancer: Moving towards pan-European coverage?

“…Five-year survival attains 80% or more [3] but survivors are subject to 8-11-times increased overall mortality [4][5][6], which remains at a 3-fold excess even 45 years after diagnosis [7], compared to the general population. Up to 90% of survivors suffer some late effect [8], including a 3-4-fold increased risk of subsequent malignancies [9,10] years after their first diagnosis. Childhood cancer is comprised of numerous tumour entities which are unusual in adults (e.g.…”

Mental Pain in Israeli Adult Childhood Cancer Survivors and Its Effects on their Quality of Life

“…Indeed, response rates as low as 49% and 43.6% were reported for example by Rosoff et al [58], 47% by McClellan al. [59] and 47.5% by Casagranda et al [60], and Gianinazzi et al [61]. A recent review [62] presents further similar examples.…”