Symptom Monitoring and Reporting System for Pediatric Chronic Illness (Illinois)

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Summary:

Children experience distressing physical symptoms, most prevalently fatigue, from cancer and its treatment. Efforts to manage cancer-related symptoms in children have not kept pace with advances in cancer treatments. Factors contributing to poor symptom management include delay in reporting symptoms to clinicians, limited time during clinic visits, and logistical and organizational barriers that limit the quality of symptom care. Timely identification of symptoms is fundamental to the overall success of cancer treatment. The Symptom Monitoring & Systematic Assessment in Young Survivors (SyMon-SAYS), a patient-oriented, technology-based symptom monitoring and reporting system, was developed to fill this need.

This project evaluated the feasibility of implementing SyMon-SAYS in pediatric oncology clinics using fatigue as a prototype symptom. Patients ages 7 to 21 and their parents were enrolled in the study. Patients were eligible if they had a cancer diagnosis, received any type of treatment or completed it within the previous 6 months, were English-speaking, and had sufficient cognitive and motor abilities to operate a telephone keypad, computer keyboard, or mouse.

The specific aims of this project were to:

  • Evaluate the feasibility of implementing the SyMon-SAYS (formerly SyMon-Peds) system in a pediatric oncology clinic, its acceptability (defined as perceived usefulness) by parents of children with cancer, and the clinicians’ and parents’ satisfaction with the system.
  • Explore the efficacy of the SyMon-SAYS (formerly SyMon-Peds) in managing fatigue.

Fifty-seven patients and their parents completed the study. Over an 8-week period, weekly fatigue assessments were completed by the patients or their parents via the Internet or interactive voice response (IVR) by phone. When pre-defined fatigue score thresholds were met, emails with fatigue reports were forwarded to clinicians. The patients, their parents, and their clinicians received cumulative graphic reports of fatigue scores prior to clinic visits at 4- and 8- weeks post-baseline. An exit survey was completed by patients and their parents at their last visit. Clinicians were also asked to complete surveys.

Parents reported their children having significantly worse fatigue than patients’ own reports. Ninety-three percent of patients and 78 percent of parents found SyMon-SAYS very-to- extremely easy to complete. The vast majority of parents reported that they were satisfied with SyMon-SAYS; 60 percent reported that it helped deal with their child’s fatigue; and 81 percent reported being willing to manage fatigue and other symptoms with the system.

Evaluations from clinicians indicated that most felt participation did not add to their workload, but only 36 percent felt that it helped with their fatigue management of patients. Despite this, 68 percent stated that most children would benefit from the system, and 67 percent said they would be willing to use it on an on-going basis. Clinicians reported that the reports were understandable, useful for fatigue management, and did not make the visit longer. A majority of clinicians did not think the report helped them to prepare to see patients, with treatment planning or decisionmaking, or to focus on the most important issues to discuss with patients and their parents.

The project team concluded that the SyMon-SAYS system is feasible to implement and acceptable to patients and parents. Future efforts will focus on better integrating the system into clinical workflow in order to improve clinician acceptance.

Symptom Monitoring and Reporting System for Pediatric Chronic Illness - 2012

Summary Highlights

  • Principal Investigator: 
  • Funding Mechanism: 
    PAR: HS08-269: Exploratory and Developmental Grant to Improve Health Care Quality Through Health Information Technology (IT) (R21)
  • Grant Number: 
    R21 HS 019071
  • Project Period: 
    March 2011 – February 2014
  • AHRQ Funding Amount: 
    $297,787
  • PDF Version: 
    (PDF, 236.21 KB)

Summary: Children experience distressing physical symptoms, most prevalently fatigue, from cancer and its treatment. Efforts to manage cancer-related symptoms in children have not kept pace with advances in cancer treatments. Factors contributing to poor symptom management include delay in reporting symptoms to clinicians, limited time during clinic visits, and logistical and organizational barriers that limit the quality of symptom care.

Using health information technology (IT) to alert patients’ parents and providers to significant changes in symptoms is one recommended strategy for improving symptom management. Building on an existing symptom monitoring and reporting system for adult oncology, Dr. Lai and her team have developed Symptom Monitoring & Systematic Assessment in Young Survivors, or SyMon-SAYS (formerly SyMon- Peds). SyMon-SAYS is a patient and parent-oriented system intended to provide a mechanism for reporting symptoms experienced by pediatric cancer patients to their health care providers. This study focuses on monitoring only a single symptom, fatigue, due to the feasibility nature of this study. By using SyMon- SAYS, pediatric oncology patients or their parents can use any Internet-accessible device, such as a computer or smartphone, or a regular telephone via interactive voice response technology to report fatigue occurring between clinic visits. Using templates developed for fatigue reports in SyMon-SAYS, the system collects and stores reported fatigue symptoms and generates fatigue reports accordingly.

These reports are transmitted to clinicians, detailing graphic displays of patients’ weekly fatigue status and highlighting changes from week to week. Significantly high fatigue scores or increases in fatigue levels are detected by the SyMon-SAYS system and activates an alert to the clinician. Upon developing and pilot- testing the system in the first year of the project, Dr. Lai and her team initiated a prospective cohort study of 50 patient (including children ages 7 to 17 and young adults ages 18 to 30) and parent dyads to evaluate: 1) the feasibility of implementing the SyMon-SAYS system in clinics, 2) patient and parent perceived usefulness, 3) provider satisfaction, and 4) efficacy of the SyMon-SAYS system in managing fatigue in pediatric cancer patients. During the study, participants complete an 8-week intervention in which they log into the system weekly, either by telephone or Internet, to report perceptions of the patients’ fatigue. If patients’ fatigue scores reach or exceed a predefined threshold, a study nurse notifies an oncologist. If the patients’ fatigue is unexpected, clinicians contact the patients’ parents to provide care recommendations in real time.

Specific Aims:

  • Evaluate the feasibility of implementing the SyMon-SAYS (formerly SyMon-Peds) system in a pediatric oncology clinic, its acceptability (defined as perceived usefulness) by parents of children with cancer, and the clinicians’ and parents’ satisfaction with the system. (Ongoing)
  • Explore the efficacy of the SyMon-SAYS (formerly SyMon-Peds) in managing fatigue. (Upcoming)

2012 Activities: The project team implemented the SyMon-SAYS system and enrolled participants in the feasibility study. Dr. Lai had planned for the feasibility study to include 100 patient-parent dyads (including patients 7 to 17 years of age), but enrollment was slower than anticipated. To address this, Dr. Lai first added an additional oncology clinic in Chicago to the study in an effort to increase patient enrollment. As recruitment and enrollment continued to lag during 2012, Dr. Lai modified the eligibility criteria to include young adult patients (18 to 30 years of age) in the study. While these efforts increased enrollment, Dr. Lai eventually modified the recruitment goal to 50 upon determining that it would not be feasible to recruit 100 participants in the study in a timely manner. By the end of 2012, the team had met their new recruitment goal of 50 participants and planned to continue recruiting for the study through January 2013 in an effort to enroll additional participants to account for potential attrition.

To better understand the barriers to recruiting participants into the SyMon-SAYS feasibility study as well as how using the system impacts clinician workflow and work load, Dr. Lai conducted formal interviews with six clinicians (two doctors and four nurses). Dr. Lai found the information gained from these interviews to be helpful in understanding how the system could be modified to better meet clinicians’ needs and be better integrated in clinical workflow if it implemented on a wider scale. For example, clinicians felt they already monitored patients’ fatigue closely and there is no need to have patients report their fatigue weekly. However, they still feel the report is helpful and are willing to receive patients’ fatigue reports regularly, with a preference of monthly rather than weekly for patients who do not generate a fatigue alert.

As last self-reported in the AHRQ Research Reporting System, project progress and activities are mostly on track and project budget funds are somewhat underspent because personnel costs were less than anticipated for the first 2 years of the project. Dr. Lai is using a 1-year no-cost extension to allow additional time for analyzing and disseminating the feasibility study findings.

Preliminary Impact and Findings: Qualitative research findings indicate both patient and parent participants as well as clinicians have positive impressions of the SyMon-SAYS system, finding it to be easy to use and helpful in managing fatigue. The final results from this study will be analyzed and reported on during the third year of the project.

Target Population: Cancer, Pediatric*, Teenagers

Strategic Goal: Develop and disseminate health IT evidence and evidence-based tools to improve health care decisionmaking through the use of integrated data and knowledge management.

Business Goal: Implementation and Use

*This target population is one of AHRQ’s priority populations.

Symptom Monitoring and Reporting System for Pediatric Chronic Illness - 2011

Summary Highlights

  • Principal Investigator: 
  • Funding Mechanism: 
    PAR: HS08-269: Exploratory and Developmental Grant to Improve Health Care Quality through Health Information Technology (IT) (R21)
  • Grant Number: 
    R21 HS 019071
  • Project Period: 
    March 2011 - February 2013
  • AHRQ Funding Amount: 
    $297,787
  • PDF Version: 
    (PDF, 206.75 KB)

Summary: Children experience distressing physical symptoms caused by cancer and its treatment, with fatigue being the most prevalent symptom. Efforts to manage cancer-related symptoms in children have not kept pace with advances in cancer treatments. Factors contributing to poor symptom management include delay in reporting symptoms to clinicians, limited time during clinic visits, and logistical and organizational barriers that limit the quality of symptom care.

Using health information technology (IT) to alert patients' parents and providers of significant changes in symptoms is one recommended strategy for improving symptom management. This project intends to do that by extending an existing symptom monitoring and reporting system for adult oncology patients to the pediatric oncology population. Dr. Lai and her team will do so by developing a system known as Symptom Monitoring & Systematic Assessment in Young Survivors, or SyMon-SAYS (formerly SyMon-Peds). SyMon-SAYS is a patient-oriented system intended to provide a mechanism for reporting symptoms experienced by pediatric cancer patients to their parents and health care providers. This study focuses on monitoring only a single symptom; fatigue. By using the SyMon-SAYS system, pediatric oncology patients or their parents can report their fatigue at home between clinic visits using any Internetaccessible device, such as a computer or smartphone, or a regular telephone via interactive voice response (IVR) technology. Using templates developed for fatigue reports and programming SyMon-SAYS, the system will collect and store fatigue symptoms reported by patients and parents and will generate fatigue reports accordingly.

These reports will be transmitted to clinicians, detailing graphic displays of patients' weekly fatigue status and highlighting changes from week to week. Significantly high fatigue scores or increases in fatigue levels will be detected by the SyMon-SAYS system and activate an alert. This alert notifies a clinician to contact the parent of the patient to consult on managing fatigue or to ask the patient to come into the clinic. After developing and pilot-testing the system, a prospective cohort study of 100 patient (ages 7 to 17) and parent dyads will be conducted to evaluate: 1) the feasibility of implementing the SyMon-SAYS system in clinics; 2) patient/parent perceived usefulness; 3) provider satisfaction; and 4) efficacy of the SyMon-SAYS system in managing fatigue in pediatric cancer patients. Participants will complete an 8-week intervention in which they will login to the system weekly, either by telephone or Internet, to report on the perceptions of the patients' fatigue. If patients' fatigue scores reach or exceed a predefined threshold, a study nurse will notify oncologists and contact the patients' parents to provide care recommendations in real time. The overall goal of the project is for SyMon-SAYS to improve symptom management for pediatric cancer patients.

Specific Aims:

  • Evaluate the feasibility of implementing the SyMon-Peds system in a pediatric oncology clinic, its acceptability (defined as perceived usefulness) by parents of children with cancer and the clinicians' and parents' satisfaction with the system. (Ongoing)
  • Explore the efficacy of the SyMon-Peds in managing fatigue. (Upcoming)

2011 Activities: During 2011, the fatigue report templates were created and the SyMon-SAYS system was developed and programmed. The patient and clinician interfaces of the system (i.e., the Web site and the IVR system) were built and quality-assurance tested. Training materials for study personnel (physicians, nurses, and research assistants) at Children's Memorial Hospital were developed, and trainings were conducted in October 2011. The system was modified to incorporate suggestions made by clinicians during the training sessions.

Pilot testing of the SyMon-SAYS system was completed as planned. Five patient-parent dyads were recruited to test the functionality of the system, the data collection and management processes, and the feasibility of the logistics associated with the intervention flow. All five dyads completed the pilot testing. Based on the findings, the research team determined that no changes to the system or process were needed. The five dyads enrolled in the pilot test will continue participation and be counted as participants of the main study. Full implementation of the SyMon-SAYS system and recruitment will continue in 2012.

As last self-reported in the AHRQ Research Reporting System, project progress and activities are mostly on track and project budget funds are somewhat underspent because proposed funds for travel and personnel costs were less than anticipated for 2011. Specifically, the research assistant for this project was unable to dedicate the percentage effort needed to support the full set of tasks and responsibilities required by the project. In 2012, the research assistant's percentage effort for this project will be increased to better support the needs of this project, thereby spending down remaining funds from 2011.

Preliminary Impact and Findings: This project has no findings to date.

Target Population: Cancer, Pediatric*

Strategic Goal: Develop and disseminate health IT evidence and evidence-based tools to improve health care decisionmaking through the use of integrated data and knowledge management.

Business Goal: Implementation and Use

* This target population is one of AHRQ's priority populations.

Symptom Monitoring and Reporting System for Pediatric Chronic Illness - Final Report

Citation:
Lai J. Symptom Monitoring and Reporting System for Pediatric Chronic Illness - Final Report. (Prepared by Northwestern University under Grant No. R21 HS019071). Rockville, MD: Agency for Healthcare Research and Quality, 2014. (PDF, 183.08 KB)

The findings and conclusions in this document are those of the author(s), who are responsible for its content, and do not necessarily represent the views of AHRQ. No statement in this report should be construed as an official position of AHRQ or of the U.S. Department of Health and Human Services.(Persons using assistive technology may not be able to fully access information in this report. For assistance, please contact Corey Mackison)
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