Standard risk acute lymphoblastic leukemia (SR-ALL) has high cure rates, but requires two to three years of therapy. We aimed to 1) prospectively evaluate health-related quality of life (HRQOL) during and after SR-ALL therapy, and 2) identify associated predictors. Parents of 160 SR-ALL patients enrolled on Children's Oncology Group (COG) therapeutic trial AALL0331 at 31 sites completed the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales (physical, emotional, and social functioning) and Family Assessment Device-General Functioning (FAD-GF) at one, six, and 12 months after diagnosis, and three months post-therapy. Mean PedsQL scores in physical, emotional, and social functioning were impaired one month after diagnosis but steadily improved. Three months post-therapy, impaired physical and social functioning was observed in 27.8% and 25.8% of patients, respectively. In repeated-measures analysis, problematic family functioning predicted emotional (OR=1.85, 95% CI 1.03-3.34) and social (OR=1.99, 95% CI 1.21-3.27) impairment. Larger household size was associated with social impairment (OR=1.21, 95% CI 1.02-1.45). Adverse neurological event(s) during therapy predicted post-therapy physical (OR=5.17, 95% CI 1.61-16.63) and social (OR=8.17, 95% CI 1.19-56.16) impairment. HRQOL one month after diagnosis was not predictive of HRQOL three months after therapy completion. In conclusion, children with SR-ALL experience considerable impairment in HRQOL at the end of induction, but rapidly improve. However, many still experience physical and social impairment three months post-therapy, suggesting a role for continued family and physical functioning support. Longer follow-up is needed to determine if post-therapy deficits change over time.
BACKGROUND
This prospective study describes the procedure-related anxiety, treatment-related anxiety, pain, and nausea experienced by children with standard-risk acute lymphoblastic leukemia (ALL) during the first year of treatment.
METHODS
This study was undertaken at 31 Children’s Oncology Group (COG) sites. Eligible children who were 2 to 9.99 years old were enrolled in a COG trial for patients with newly diagnosed standard-risk ALL from 2005 to 2009. Parents completed a demographic survey at the baseline and the Pediatric Quality of Life Inventory 3.0 Cancer Module (proxy version) and the General Functioning Scale of the Family Assessment Device 1, 6, and 12 months after the diagnosis. The association between patient-related (age, sex, ethnicity, and treatment), parent-related (marital status and education), and family-related factors (functioning, income, and size) and symptom scores was evaluated.
RESULTS
The mean scores for procedure-related anxiety, treatment-related anxiety, and pain improved during the first year of treatment (P < .0389). The mean nausea score was poorer 6 months after the diagnosis in comparison with the other assessments (P = .0085). A younger age at diagnosis was associated with significantly worse procedure-related anxiety (P = .004). An older age (P = .0002) and assignment to the intensified consolidation study arm (P = .02) were associated with significantly worse nausea.
CONCLUSIONS
Children with ALL experienced decreasing treatment-related anxiety, procedure-related anxiety, and pain during the first year of treatment. In comparison with scores at 1 and 12 months, nausea was worse 6 months after the diagnosis. Minimization of procedure-related anxiety in younger children and improved nausea control in older children and those receiving more intensified treatment should be prioritized.
This pilot study of a motivational activity tracker demonstrated feasibility as measured by participant retention, receptivity, and belief of utility. Future studies with a large sample size are needed to demonstrate the efficacy and sustainability of this intervention.
More research is needed to clarify the link between insurance status and survivorship care to increase appropriate late effects surveillance in this population.
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