Patient-Reported Outcome Benefits for Children with Advanced Cancer and Parents: A Qualitative Study.

CONTEXT

Electronic patient-reported outcomes (e-PROs) in pediatric oncology may be useful to track patients' symptoms and quality of life (QoL). However, implementation in the clinical setting is limited and few studies have examined child and parent perspectives on e-PRO usage.

OBJECTIVES

This brief report aims to explore child and parent perspectives on the benefits of using e-PROs to routinely report on symptoms and QoL.

METHODS

We analyzed qualitative data embedded within the PediQUEST Response trial, a randomized controlled trial aimed at early palliative care integration for children with advanced cancer and their parents. Study dyads, made up of a child and their parent, completed weekly surveys assessing symptoms and QoL for 18 weeks, and were invited to participate in an audio-recorded exit interview to share study feedback. Interview transcripts were analyzed with a thematic analysis approach, with emergent themes centered on the benefits of e-PRO usage reported here.

RESULTS

Of 154 total randomized participants, we collected 147 exit interviews representing 105 child participants. Interviewed children (n=47) and parents (n=104) were mostly White and non-Hispanic. Two predominant themes emerged regarding e-PRO benefits:1) raised reflection and awareness of self and others' experiences, and 2) increased communication and connection between parents and children or between study dyads and care teams through survey prompted discussion.

CONCLUSION

Advanced pediatric cancer patients and their parents found benefit in completing routine e-PROs as they promoted greater reflection and awareness and increased communication. These results may inform further integration of e-PROs in routine pediatric oncology care.