A patient-centered symptom monitoring and reporting system for children and young adults with cancer (SyMon-SAYS)

Jin Shei Lai*, Susan Yount, Jennifer L. Beaumont, David Cella, Jacquie Toia, Stewart Goldman

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

10 Scopus citations

Abstract

Background: This study evaluated the feasibility of implementing a patient-centered, technology-based symptom monitoring and reporting system (SyMon-SAYS) in pediatric oncology clinics using fatigue as a prototypic symptom. Timely identification of symptoms related to multi-modal therapy for children with cancer is fundamental to the overall success of cancer treatment. SyMon-SAYS was developed to address this need. Procedure: Patients with a cancer diagnosis, ages 7-21 years, currently on treatment, or off treatment within 6 months, were eligible. Patients/parents completed weekly fatigue assessments over 8 weeks via the internet or interactive voice response (IVR) by phone. Alert emails were generated when pre-defined fatigue score thresholds were met, and fatigue reports were forwarded to clinicians accordingly. Clinicians and parents/patients received cumulative graphic reports of fatigue scores prior to clinic visits at 4 and 8 weeks post-baseline to facilitate discussion. Parents/patients completed an exit survey at their last visit. Results: Fifty-seven patients/parents completed the study. The majority of patients (93%) and parents (78%) felt it was very/extremely easy to complete SyMon-SAYS; 95% of parents were satisfied with the system; 60% reported it helped deal with their child's fatigue; 70% reported that clinicians didn't discuss fatigue with them; 81% would be willing to use SyMon-SAYS to manage fatigue and other symptoms. Clinicians reported insufficient time to review reports, yet 71% were willing to receive the report on a monthly basis. Conclusion: SyMon-SAYS is feasible and acceptable to patients and parents. Future efforts should focus on better integrating the system into the clinical workflow to improve clinicians' acceptance.

Original languageEnglish (US)
Pages (from-to)1813-1818
Number of pages6
JournalPediatric Blood and Cancer
Volume62
Issue number10
DOIs
StatePublished - Oct 1 2015

Keywords

  • Cancer
  • Fatigue
  • Pediatrics
  • Symptom monitoring

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Hematology
  • Oncology

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