title: A patient-centered symptom monitoring and reporting system for children and young adults with cancer (SyMon-SAYS).
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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors: Medical Social Sciences, Feinberg School of Medicine at Northwestern University, Chicago, Illinois.|Department of Pediatrics, Feinberg School of Medicine at Northwestern University, Chicago, Illinois.
authors: Jin-Shei
authors: JS
authors: Lai
authors: Medical Social Sciences, Feinberg School of Medicine at Northwestern University, Chicago, Illinois.
authors: Susan
authors: S
authors: Yount
authors: Medical Social Sciences, Feinberg School of Medicine at Northwestern University, Chicago, Illinois.
authors: Jennifer L
authors: JL
authors: Beaumont
authors: Medical Social Sciences, Feinberg School of Medicine at Northwestern University, Chicago, Illinois.
authors: David
authors: D
authors: Cella
authors: Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois.
authors: Jacquie
authors: J
authors: Toia
authors: Department of Pediatrics, Feinberg School of Medicine at Northwestern University, Chicago, Illinois.|Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois.
authors: Stewart
authors: S
authors: Goldman
mesh_terms: D000293:Adolescent; D002648:Child; D005221:Fatigue / Q000175:diagnosis* / Q000209:etiology; D005240:Feasibility Studies; D005260:Female; D006801:Humans; D020407:Internet; D008297:Male; D009369:Neoplasms / Q000150:complications*; D011788:Quality of Life; D019114:Remote Consultation / Q000379:methods*; D013689:Telephone; D055815:Young Adult
keywords: cancer; fatigue; pediatrics; symptom monitoring