Abstract
ObjectiveParents report psychological distress in association with their child's cancer. Reliable tools are needed to screen parental distress over the cancer trajectory. This study aimed to estimate the stability and repeatability of the Distress Thermometer (DT) and the Depression and Anxiety items of the Edmonton Symptom Assessment System-revised (ESAS-r-D; -A) in parents of children diagnosed with cancer.MethodsFifty parents (28 mothers, median age = 44) of clinically stable survivors of childhood solid and brain tumours completed questionnaires about their own distress (DT, ESAS-r-D; -A, Brief Symptom Inventory-18: BSI-18, Patient Health Questionnaire-9: PHQ-9, Generalized Anxiety Disorder-7: GAD-7) and their children’s quality of life (QoL; Peds Quality of Life: PedsQL) twice, with a month interval between the two assessments. At retest, parents also evaluated life events that occurred between the two time points. Hierarchical regressions explored moderators for the temporal stability of test measures.ResultsStability estimates were ICC = .78 for the DT, .55 for the ESAS-r-D, and .47 for the ESAS-r-A. Caseness agreement between test and retest was substantial for the DT, fair for the ESAS-r-D, and slight for the ESAS-r-A. Repeatability analyses indicated that the error range for the DT was more than 2 pts below/above actual measurement, whereas it was more than 3 pts for the ESAS-r-A, and 2.5 for the ESAS-r-D. Instability of the DT could be explained by changes in children’s physical QoL, but not by other components of QoL or life events. No moderators of stability could be identified for the ESAS-r items.ConclusionsThe DT appears to be a fairly stable measure when the respondent's condition is stable yet with a relatively wide error range. Fluctuations in distress-related constructs may affect the temporal stability of the DT. The lower stability of ESAS-r items may result from shorter time-lapse instructions resulting in a greater sensitivity to change. Findings support future research on the DT as a reliable instrument in caregivers.
Highlights
Caring for a child with cancer is a distressing experience, which can affect parents in the longterm
Caseness agreement between test and retest was substantial for the Distress Thermometer (DT), fair for the Edmonton Symptom Assessment System (ESAS)-r-D, and slight for the Edmonton Symptom Assessment System-revised (ESAS-r)-A
Repeatability analyses indicated that the error range for the DT was more than 2 pts below/above actual measurement, whereas it was more than 3 pts for the ESAS-r-A, and 2.5 for the ESAS-r-D
Summary
Caring for a child with cancer is a distressing experience, which can affect parents in the longterm. Parents continue to be exposed to illness-related stressors such as uncertainty about cure/relapse [1], physical or emotional late effects [2], and risk of a second cancer [3]. A recent review suggested that even though most parents are resilient, a substantial subgroup of parents of survivors report clinical levels of distress, severe traumatic stress, and worries regarding their child's health beyond five years post-diagnosis [4]. Studies have described parents' difficult adjustment when their child had received intense treatments, such as in the care of brain tumour patients [5, 6]. With parents being the primary caregivers of their child, it is paramount to address their needs accurately to promote family resilience. In a context where support care resources are rare, developing reliable screening tools to identify distress in parents is an important task
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