Knocking it Out of the Park for Cancer Symptom Support: Lessons Learned in the Development and Evaluation of a Cancer Patient Self-Management System
Presenter: Katherine Schilling, Ed.D. Associate Professor of Library and Information Science,
Indiana University, Indianapolis, Indiana
- Katherine Schilling, Ed.D. Associate Professor of Library and Information Science,
- Indiana University
- Christine M. Newlon, Indiana University School of Informatics
- Kimberly Wagler-Ziner, Assistant Scientist, Center for Research and Scholarship, IU School of Nursing and Behavioral Research Recruitment Core Coordinator, Indiana University Simon Cancer Center
- Robert Skipworth Comer, Indiana University School of Informatics
- Anna M. McDaniel, PhD., Indiana University School of Informatics and Indiana University School of Nursing
Background: The patient symptom monitoring and management system (SMMS) is a secure web portal through which cancer patients’ symptoms are recorded and tracked. It incorporates ongoing assessment of patients’ symptoms, tailored information delivery, and automated symptom messaging to oncology nurses. This presentation describes issues and challenges in developing and evaluating the SMMS. Portal design, usability, security, and pilot testing with patients and healthcare providers will be discussed, and results of evaluation activities will be described.
Methods: The patient-driven SMMS was developed at a major oncology center, then piloted with newly-diagnosed colon cancer patients (n = 12). Each week, over a period of eight weeks, patients recorded their cancer-related symptoms such as fatigue, nausea, numbness, pain, diarrhea, loss of appetite, and others (N = 103). Symptom severity was ranked on a 0 (not a problem) to 10 (interfered heavily with my lifestyle) scale (M = 4). Based on each week’s symptoms and related health management questions, the SMMS generated an evidence-based information Toolkit tailored to each patient’s symptoms and concerns.
Results and Discussion: Development and evaluation activities are discussed, including web mining to identify patterns in testers’ symptoms and information behaviors. Individual-level and system-level data collected through portal activity logs included login time, time on-page, reported symptoms, and information resources used in support of symptom self-management. Data analysis has helped troubleshoot design and system interaction problems. Research findings are also used to improve the SMMS’s functionality, promoting more effective cancer symptom self-management support for patients.
My notes (Apologies for their quality! Contribute your additional thoughts and related resources in the comments!):
- What it is: a web-based interactive system development and assessment.
- Cancer is no longer an acute disease. People are living with cancer for longer periods of time. Survivorship begins with diagnosis!
- Cancer survivors have significant needs. The cancer symptom management system created to meet these needs. It is multidisciplinary.
- It is designed as a database to log symptoms and manage information.
- (Research shows that increased knowledge helps with coping.)
- Unique and complicated needs in a very difficult time.
- Provider and patient sign up together. Providers get dings when symptoms reach a threshold, but they can also sign in to track/trend their patients’ symptoms.
- There is also a piece for caregivers (family, etc.), and this is the piece an insurance company bought.
- Various usability features modified as it was seen how the site was used.
- Caregivers are linked to the patient, particularly important where there is geographical distance.
- Evaluation of pilot – who what when where why and how
- Looked at case trends, toolkit (which provides supplementary info) usage. Reading skills, health literacy are important.
- 1 patient was more engaged. They tried to figure out why, but it was difficult with the lack of information in the system. The next test will be modified to capture more behavior.
- Project has raised new questions:
- How do symptoms drive useage patterns?
- How is the information toolkit used in decision making?
- Continue to engage with users to “target rather than tailor.”
- Recruitment, needed people with Internet
- HIPAA failures
- System crash, had to be monitored.
- Michigan and Indiana are arguing about who owns what, who does what, publication rights.
- Web portal
- Established content
- Developed various best practices around methodology, testing, developing structure, developing team, usability, funding.