Distress screening in parents of children with cancer during active treatment: A pilot study

Abstract

Introduction: A cancer diagnosis during childhood is associated with significant psychological distress in parents. While distress screening is now recognized as a standard of care in pediatric oncology, few programs have effectively implemented this practice—particularly for caregivers of children newly diagnosed with cancer.

Objective: In this pilot study, we gathered caregiver distress screening results at two different timepoints (T1 and T2), as part of an initiative to implement systematic distress screening by Oncology Nurse Navigators (ONNs) in a large pediatric oncology centre.

Method: Data were analyzed from the Distress Detection Tool (DDT) using a standard quantitative descriptive approach. The DDT includes two validated measures: the Distress Thermometer (DT) with an accompanying Problem List (DT-P) and the Edmonton Symptom Assessment System–Revised (ESAS-r).

Results: Fourteen parents agreed to participate and completed assessments at both timepoints, resulting in a total of 28 DDT assessments analyzed. At the time of assessment, parents were approximately 3.6 months post-diagnosis of their child at T1 and 8.3 months at T2. The mean distress score on the DT was 3.57 (SD = 2.35, range = 0–9), with an average of 6.89 problems reported on the Problem List (SD = 4.79, range = 0–18). A total of 42.9% (n = 12) of participants scored above the clinical cut-off of 4 on the DT. Comparison of results between T1 and T2 revealed a decrease in distress scores, with a large to very large effect size (Cohen’s d = -1.01). Additionally, there was a 28.5% reduction in the number of parents reporting clinically significant distress. On the ESAS-r, a substantial proportion of parents continued to report clinically significant scores at T2, particularly for fatigue (64.3%, n = 9), drowsiness (57.1%, n = 8), and anxiety (57.1%, n = 8).

Conclusion: To our knowledge, this is the first study to examine ESAS-r results and referral rates following distress screening in this population. While distress generally decreases over time, many parents continue to experience significant distress and psychosocial issues. These findings align with previous research and underscore the importance of systematic distress screening to ensure equitable access to care. The DT-P is a practical and effective tool; however, further research is needed before the ESAS-r can be fully integrated as a screening tool for parents of children with cancer.