Improving the Care of Children With Advanced Cancer by Using an Electronic Patient-Reported Feedback Intervention: Results From the PediQUEST Randomized Controlled Trial

Title

Improving the Care of Children With Advanced Cancer by Using an Electronic Patient-Reported Feedback Intervention: Results From the PediQUEST Randomized Controlled Trial

Creator

Wolfe J; Orellana L; Cook EF; Ullrich CK; Kang TI; Geyer JR; Feudtner C; Weeks Jane C; Dussel V

Publisher

Journal Of Clinical Oncology

Date

2014

Subject

Child; Female; Humans; Male; Palliative Care; Neoplasms; Treatment Outcome; Electronic Health Records; Pilot Projects; Symptom Assessment; Feedback; Intervention Studies; Sickness Impact Profile; quality of life; Preschool

Description

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.
2014-03

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Pages

JCO.2013.51.5981-JCO.2013.51.5981

Citation

Wolfe J; Orellana L; Cook EF; Ullrich CK; Kang TI; Geyer JR; Feudtner C; Weeks Jane C; Dussel V, “Improving the Care of Children With Advanced Cancer by Using an Electronic Patient-Reported Feedback Intervention: Results From the PediQUEST Randomized Controlled Trial,” Pediatric Palliative Care Library, accessed July 29, 2021, https://pedpalascnetlibrary.omeka.net/items/show/14839.

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