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A patient‐centered symptom monitoring and reporting system for children and young adults with cancer (SyMon‐SAYS)
Author(s) -
Lai JinShei,
Yount Susan,
Beaumont Jennifer L.,
Cella David,
Toia Jacquie,
Goldman Stewart
Publication year - 2015
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.25550
Subject(s) - medicine , pediatric oncology , phone , childhood cancer , cancer , pediatric cancer , family medicine , physical therapy , pediatrics , philosophy , linguistics
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. Pediatr Blood Cancer 2015;62:1813–1818. © 2015 Wiley Periodicals, Inc.