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3 Clinical Utility of Neurocognitive Monitoring During Therapy in Survivors of Childhood Acute Lymphoblastic Leukemia (ALL)
- Rachel M Bridges, Lacey P Hall, Heather M Conklin, Kendra R Parris, Jason M Ashford, Ching-Hon Pui, Sima Jeha, Lisa M Jacola
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- Journal:
- Journal of the International Neuropsychological Society / Volume 29 / Issue s1 / November 2023
- Published online by Cambridge University Press:
- 21 December 2023, pp. 511-512
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Objective:
Survivors of childhood ALL treated with CNS-directed chemotherapy are at risk for neurocognitive deficits that emerge during treatment and impact functional and quality of life outcomes throughout survivorship. Neurocognitive monitoring is the recommended standard of care for this population; however, information on assessment timing and recommendations for assessment measures are limited. We examined the role of serial neurocognitive monitoring completed during protocol-directed therapy in predicting parent-reported neurocognitive late effects during survivorship.
Participants and Methods:Parents of 61 survivors of childhood ALL completed a semi-structured survey focused on parent perspective of neurocognitive late effects as part of a quality improvement project. Survivors completed protocol-directed treatment for newly diagnosed ALL on two consecutive clinical trials (St. Jude Total Therapy Study 15, 47.5%; Total Therapy 16, 52.5%). The majority of survivors were White (86.9%), 52.5% were male, and 49% were treated for low risk disease. Mean age at diagnosis was 7.77 years (standard deviation [SD] = 5.31). Mean age at survey completion was 15.25 years (SD = 6.29). Survivors completed neurocognitive monitoring at two prospectively determined time points during and at the end of protocol-directed therapy for childhood ALL.
Results:During survivorship, parents reported that 73.8% of survivors experienced neurocognitive late effects, with no difference in frequency of endorsement by protocol (p = .349), age at diagnosis (p = .939), patient sex (p = .417), or treatment risk arm (p = .095). In survivors with late effects, 44.3% sought intervention in the form of educational programming (i.e., 504 or Individualized Education Program). Among the group with late effects, compared to those without educational programming, those with educational programming had worse verbal learning (CVLT Trials 1-5 Total, Mean[SD]; T = 56.36 [11.19], 47.00 [10.12], p = .047) and verbal memory (CVLT Short Delay Free Recall, Z = 0.86 [0.67], -0.21 [1.01], p = .007); Long Delay Free Recall, Z = 0.91 [0.92], -0.25 [1.25], p = .020) during therapy. Compared to those without educational programming, survivors with educational programming had lower estimated IQ (SS = 109.25 [13.48], 98.07 [15.74], p = .045) and greater inattention [CPT Beta T = 56.80 [13.95], 75.70 [22.93], p = .017) at the end of therapy.
Conclusions:Parents report that nearly three quarters of children treated for ALL with chemotherapy only experience neurocognitive late effects during early survivorship, with no difference in frequency by established risk factors. Of those with late effects, nearly half required educational programming implemented after diagnosis, suggesting a significant impact on school performance. Results from neurocognitive monitoring beginning during therapy has utility for predicting educational need in survivors experiencing late effects. Our findings provide direction on the timing and content of neurocognitive monitoring, which is the recommended standard of care for childhood cancer patients treated with CNS-directed therapy.
It must be awful for them: Perspective and task context affects ratings for health conditions
- Heather P. Lacey, Angela Fagerlin, George Loewenstein, Dylan M. Smith, Jason Riis, Peter A. Ubel
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- Journal:
- Judgment and Decision Making / Volume 1 / Issue 2 / November 2006
- Published online by Cambridge University Press:
- 01 January 2023, pp. 146-152
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When survey respondents rate the quality of life (QoL) associated with a health condition, they must not only evaluate the health condition itself, but must also interpret the meaning of the rating scale in order to assign a specific value. The way that respondents approach this task depends on subjective interpretations, resulting in inconsistent results across populations and tasks. In particular, patients and non-patients often give very different ratings to health conditions, a discrepancy that raises questions about the objectivity of either groups’ evaluations. In this study, we found that the perspective of the raters (i.e., their own current health relative to the health conditions they rated) influences the way they distinguish between different health states that vary in severity. Consistent with prospect theory, a mild and a severe lung disease scenario were rated quite differently by lung disease patients whose own health falls between the two scenarios, whereas healthy non-patients, whose own health was better than both scenarios, rated the two scenarios as much more similar. In addition, we found that the context of the rating task influences the way participants distinguish between mild and severe scenarios. Both patients and non-patients gave less distinct ratings to the two scenarios when each were presented in isolation than when they were presented alongside other scenarios that provided contextual information about the possible range of severity for lung disease. These results raise continuing concerns about the reliability and validity of subjective QoL ratings, as these ratings are highly sensitive to differences between respondent groups and the particulars of the rating task.