Parent Views on Parent and Child-reported Outcomes in Pediatric Advanced Cancer: A Qualitative Study.

Abstract

Background: Research on concurrent parent and patient-reported outcomes has primarily focused on reaching agreement. However, little is known about how to interpret and address discrepancies, which are not uncommon, between both viewpoints.

Objectives: To explore parents' perspectives on reporting about child symptoms and quality of life (QoL) concurrently with their child in the context of pediatric advanced cancer.

Methods: This qualitative study was embedded in the PediQUEST Response Study, a randomized controlled trial of timely palliative care integration in children with advanced cancer. Over 18 weeks, study dyads (children ≥5 years old and one parent) completed weekly e-PROs assessing symptoms and QoL. Using a grounded theory approach, we ran a secondary analysis of end-of-study semi-structured parent interviews to examine their views on concurrent reporting of symptoms.

Results: Out of 110 randomized dyads included in this analysis, 77 parents completed an exit interview. Most were White non-Hispanic mothers. Parent reflections on concurrent reporting of child symptoms and QoL are summarized in the following themes: symptom experience is subjective, parent and child viewpoints are unique, parents ask fewer questions as they adapt to child treatment, and children may hesitate to share symptoms. To better grasp their child's experience, parents developed proactive communication strategies.

Conclusion: Interviewed parents acknowledged that parent report and child self-report are distinct and complementary. Their perspectives provide guidance to clinicians and researchers about the implementation and interpretation of concurrent outcomes measurement in pediatric advanced cancer care.

Clinicaltrials: gov NCT03408314.