Self-reported and parent proxy reported functional impairment among pediatric cancer survivors and controls

Abstract

Background: A unique and limiting component in the research on functional impairment among children has been the exclusive use of parent proxy reports about child functioning; and there is limited information regarding the impact of pediatric cancer treatment on children's day-today functioning and how this is related to neurocognitive functioning. The objective of the current study was to examine a novel measure of self-reported functional impairment, and explore the relationship between self-reported and parent-reported child functional impairment in pediatric cancer survivors compared to controls. Methods: A cross-sectional cohort of survivors (n = 26) and controls (n = 53) were recruited. Survivors were off treatment an average of 6.35 years (SD = 5.38; range 1-15 years) and demonstrated an average "medium" Central Nervous System treatment intensity score. Participants completed measures of functional impairment (FI), intellectual assessment (RIST) and executive functions (NIH Examiner), while parents reported on children's functional impairment. Results: Survivors were similar to controls in functional impairment. Regardless of group membership, self-reported FI was higher than parent-reported FI, although they were correlated and parent report of FI significantly predicted self-reported FI. Across groups, increased impairment was associated with four of seven Examiner scores. Conclusions: Research regarding self-reported functional impairment of cancer survivors and its association with parent-reported functional impairment and neurocognitive deficits has been limited. Our results suggest that selfreported FI appears to be a reasonable and viable outcome measure that corresponds with and adds incremental validity to parent reported FI. While low treatment intensity may confer relative sparing of functional impairment among survivors, children report higher FI levels than parents, suggesting that FI can be of clinical utility. In conclusion, pediatric cancer survivors should be screened for self-reported functional difficulties.

Self- and Parent-Reported Psychological Symptoms in Young Cancer Survivors and Control Peers: Results from a Clinical Center

“…Survivors were similar to the controls in self-reported functional impairment. In both groups, the self-reported and parent-reported functioning were found to be correlated [13]. In the present study, we investigated emotional, somatic, and behavioral symptoms in a clinical sample of pediatric cancer survivors in comparison with healthy control peers.…”

Healthy lifestyles in childhood cancer survivors in South Korea: a comparison between reports from children and their parents

“…Children between 6 and 12 years old are in a period of concrete operational cognitive development, developing the sense of industry, their own perspectives, and acquiring new technology in daily life [ 10 , 11 ]. In addition, they illustrate the virtues of active work, a practical approach, and the developmental progression of illness knowledge.…”

“…The importance of the daily functioning of CCS has emerged as a research focus in recent years [ 11 ]. However, related information is only available to a limited extent, although CCS need such information to maintain and promote an HLS.…”

“…Providing care for these patients requires identifying and recognizing their HLS. Moreover, children's HLS is strongly influenced by their parents' nurturing style and the surrounding environment [ 11 ]. Therefore, obtaining information on the HLS of CCS as reported by the children themselves and their parents may be the first step toward planning and implementing nursing interventions for maintaining positive health outcomes.…”