Improving the care of children with advanced cancer by using an electronic patient-reported feedback intervention: results from the PediQUEST randomized controlled trial

Abstract

Purpose: This study aimed to determine whether feeding back patient-reported outcomes (PROs) to providers and families of children with advanced cancer improves symptom distress and health-related quality of life (HRQoL).

Patients and methods: This study was a parallel, multicentered pilot randomized controlled trial. At most once per week, children age ≥ 2 years old with advanced cancer or their parent completed the computer-based Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) survey consisting of age- and respondent-adapted versions of the Memorial Symptom Assessment Scale (MSAS), Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL4.0), and an overall Sickness question. In the intervention group (n = 51), oncologists and families received printed reports summarizing PROs; e-mails were sent to oncologists and subspecialists when predetermined scores were exceeded. No feedback was provided in the control group (n = 53). Primary outcomes included linear trends of MSAS, PedsQL4.0 total and subscale scores, and Sickness scores during 20 weeks of follow-up, along with child, parent, and provider satisfaction with PediQUEST feedback.

Results: Feedback did not significantly affect average MSAS, PedsQL4.0, or Sickness score trends. Post hoc subgroup analyses among children age ≥ 8 years who survived 20 weeks showed that feedback improved PedsQL4.0 emotional (+8.1; 95% CI, 1.8 to 14.4) and Sickness (-8.2; 95% CI, -14.2 to -2.2) scores. PediQUEST reports were valued by children, parents, and providers and contributed at least sometimes to physician initiation of a psychosocial consult (56%).

Conclusion: Although routine feedback of PROs did not significantly affect the child's symptoms or HRQoL, changes were in expected directions and improvements observed in emotional HRQoL through exploratory analyses were encouraging. Importantly, children, parents, and providers value PRO feedback.

Trial registration: ClinicalTrials.gov NCT01838564.

Conflict of interest statement

Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.

Figures

Fig 1.

The Evaluation of Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) study flow diagram at 20 weeks of follow-up. (*) One site did a preassessment of eligibility; all patients from that site were eligible.

Fig 2.

Symptom, health-related quality of life, and sickness average score changes in children receiving the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) intervention during 20 weeks of follow-up. The figure shows estimated average score differences between intervention and control groups for all children (blue bars), and exploratory subgroup analysis (gold, gray, and red bars). See Data Supplement for effect estimates and 95% CIs. PQ-MSAS, PediQUEST-Memorial Symptom Assessment Scale; PedsQL4.0, Pediatric Quality of Life Inventory 4.0. (*) .05 P ≤ .10; (†) .01 < P ≤ .05; (‡) P ≤ .01.

Fig 3.

Child, parent, and provider satisfaction with Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST [PQ]) feedback reports. Figure shows selected responses from 41 families (29 children age ≥ 8 years old, 24 parents) who answered the first satisfaction with PQ intervention survey and from 18 primary oncologists who answered the provider satisfaction online survey and received PQ reports. QoL, quality of life.