How are you sleeping? Any nausea? How about pain? Monitoring symptoms is an important part of cancer care, as it guides treatment decisions.
But tracking the symptoms of children with cancer, especially young kids, is particularly challenging because they may not understand the questions, or their importance, says Christina Baggott, PhD, RN, assistant professor at the UCSF School of Nursing.
Colorful cartoon characters and interactive digital technology may help. Preliminary results of a recent study by Baggott, a trained oncology nurse, found that children with cancer were significantly more likely to weigh in on their symptoms when using a kid-friendly touch-screen computer assessment tool, than the standard written checklist.
“From a clinical standpoint, it’s very important to catch these symptoms early, so we can intervene at an early stage,” says Baggott, who collaborated on the study with Norwegian colleagues who designed the program, known as Sisom.
The traditional written checklist, the Memorial Symptom Assessment Scale or MSAS, was used for comparison. It asks patients to rate their experience with a number of symptoms.
“But children may feel uncomfortable discussing certain concerns with clinicians or their parents and may be reticent to report these issues via interview," Baggott says. To find a better solution, she worked with 100 pediatric cancer patients and their parents at UCSF Benioff Children's Hospital and Stanford Medical Center to compare the answers between the checklist and the computer program.
Baggott looked at a variety of comparisons — how responses by children and by parents differ between the two methods, and how pediatric responses compare to their parents.
“Analyzing the data is complicated because it is being collected from the symptom checklists and from the computer software, entered into a central database,” says Baggott. At each step of the way, all information must be protected by patient privacy laws.
Looking for help, she turned to Consultation Services, a program of UCSF’s Clinical and Translational Science Institute (CTSI), specifically RedCap, a Research Electronic Data Capture System that enables researchers to quickly and easily develop data capture forms, reports, and surveys housed for investigators by CTSI.
“I was impressed that UCSF faculty and senior staff provide expert advice,” Baggott says. She was matched with one of them to help her create efficient ways to merge results from the two response methods into one database that can be analyzed in a variety of ways.
Christina Baggott, PhD, RN
With her study, Baggott found out that children acknowledged significantly more concerns using Sisom than the checklist. “Sisom may promote children to acknowledge issues and may lead to an improved understanding of pediatric oncology patients’ emotional and physical concerns,” she says.
Now Baggott is examining factors such as the child's age, gender, spoken language and time since diagnosis.
CTSI is a member of the National Institutes of Health-funded Clinical and Translational Science Awards network focusing on accelerating research to improve health. The Institute provides services for researchers at every stage, and promotes online collaboration and networking through UCSF Profiles.