Relationship Between Parental Distress and Proxy Symptom Reports in Pediatric Palliative Care

Abstract

Context

In pediatric palliative care (PPC), patients often are not able to report symptoms so proxy reports from parents are used. Whether psychological distress in the proxies affects reports of patients’ symptoms is unknown.

Objective

To measure the influence of parents’ distress on proxy-reported scores regarding symptoms by analyzing pairs of parents reporting on the same child.

Methods

In a large prospective cohort study of PPC patients, we collected parents’ reports of child symptoms (Memorial Symptom Assessment Scale) and their own psychological distress (Kessler-6). In this quasi-experimental design study, we examined data from pairs of parents reporting symptoms for the same child. Using regression modelling, we estimated the association between parental distress scores and patient total symptom scores across the entire sample accounting for clustering within families, and then measured the association within-families of the absolute differences of the two parents’ distress and the difference in their symptom scores.

Results

Among 152 parents in 76 families, 50.0% were female, 80.9% were White, and the mean age was 36.4 (SD 9.0) years. Across the sample, each 1-point increase in reported parental distress was associated with a 1.07 (95% CI, 0.87–1.28; P < 0.001) increase in proxy-reported patient symptom score. Within families, relative to the other parent, each 1-point increase in the difference of the distress scores was associated with a 0.33-point (95% CI, 0.32–0.35; P = 0.006) increase in the difference in symptom scores.

Conclusion

Psychological distress appears to influence proxy reports of symptoms which has implications for future research and clinical practice.