title: Improving the care of children with advanced cancer by using an electronic patient-reported feedback intervention: results from the PediQUEST randomized controlled trial.
abstract: OBJECTIVE
  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).
  
  
  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%).
  
  
  CONCLUSIONS
  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.
authors.affiliation: Joanne Wolfe, Christina Ullrich, Jane C. Weeks, and Veronica Dussel, Dana-Farber Cancer Institute; Joanne Wolfe and Christina Ullrich, Boston Children's Hospital; Joanne Wolfe, Christina Ullrich, and Jane C. Weeks, Harvard Medical School; E. Francis Cook, Harvard School of Public Health, Boston, MA; Liliana Orellana, University of Buenos Aires; Veronica Dussel, Institute for Clinical Effectiveness and Health Policy, Buenos Aires, Argentina; Tammy Kang and Chris Feudtner, The Children's Hospital of Philadelphia and the University of Pennsylvania, Philadelphia, PA; and Jeffrey Russell Geyer, Seattle Children's Hospital, Fred Hutchinson Cancer Research Center, and University of Washington, Seattle, WA.
authors.forename: Joanne
authors.initials: J
authors.lastname: Wolfe
authors.forename: Liliana
authors.initials: L
authors.lastname: Orellana
authors.forename: E Francis
authors.initials: EF
authors.lastname: Cook
authors.forename: Christina
authors.initials: C
authors.lastname: Ullrich
authors.forename: Tammy
authors.initials: T
authors.lastname: Kang
authors.forename: Jeffrey Russell
authors.initials: JR
authors.lastname: Geyer
authors.forename: Chris
authors.initials: C
authors.lastname: Feudtner
authors.forename: Jane C
authors.initials: JC
authors.lastname: Weeks
authors.forename: Veronica
authors.initials: V
authors.lastname: Dussel
mesh_terms: D002648:Child; D002675:Child, Preschool; D057286:Electronic Health Records; D005246:Feedback; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy*; D010166:Palliative Care; D010865:Pilot Projects; D011788:Quality of Life; D018434:Sickness Impact Profile; D063189:Symptom Assessment; D016896:Treatment Outcome