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

TitleImproving the care of children with advanced cancer by using an electronic patient-reported feedback intervention: results from the PediQUEST randomized controlled trial.
Publication TypeJournal Article
Year of Publication2014
AuthorsWolfe J, Orellana L, E Cook F, Ullrich C, Kang T, Geyer JR, Feudtner C, Weeks JC, Dussel V
JournalJ Clin Oncol
Volume32
Issue11
Pagination1119-26
Date Published2014 Apr 10
ISSN1527-7755
KeywordsChild, Child, Preschool, Electronic Health Records, Feedback, Female, Humans, Male, Neoplasms, Palliative Care, Pilot Projects, Quality of Life, Sickness Impact Profile, Symptom Assessment, Treatment Outcome
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.

DOI10.1200/JCO.2013.51.5981
Alternate JournalJ. Clin. Oncol.
PubMed ID24616307
PubMed Central IDPMC3970170
Grant List1K07 CA096746-01 / CA / NCI NIH HHS / United States