College of Nursing
77 Understanding Pediatric Oncology Clinicians Workflow in Relation to the Electronic Health Record and Symptom Assessment
Phoebe Ojo and Lauri Linder
Faculty Mentor: Lauri Linder (Nursing, University of Utah)
Introduction
Children with cancer frequently experience symptoms such as nausea, pain, and fatigue that impact their quality of life. Communicating multiple symptoms between clinical visits remains a challenge in pediatric care. Dr. Lauri Linder and The GApp Lab developed Color Me Healthy, a game-based mobile app to support child-reported symptom tracking. The next phase involves developing a clinician-facing interface integrated with the electronic health record (EHR) to support clinical use of symptom data, which is essentially the main purpose for this project. We want to be able to view the data reported by children using the Color Me Healthy app in electronic health records. Our goal is that the clinicians will be able to view the children’s self- reported symptoms using the Color Me Healthy app in their electronic health record during a clinical visit.
About Color Me Healthy
Color Me Healthy (CMH) is a tablet-based symptom tracking mobile health (mHealth) app for school-age children.
The Color Me Healthy app was originally developed to empower school-age children to self- report their symptoms at home. Using principles of user-centered design, previous studies demonstrated high perceived usefulness with children regarding the app as fun and easy to use.
Background of the Application
This project has been in process for significant time. Dr. Linder’s team started off with an exploratory phase, during which they would engage with the children in what they called “draw and tell” interviews, an arts-based activity that helped the children express how they were feeling (Driessnack, 2006). The team would ask the question, “draw me a good day,” or “draw me a bad day,” and the child would then proceed to draw what they saw to be a good or bad day for them. From the “Symptoms and Self-Management Strategies Identified by Children with Cancer Using Draw-and-Tell Interviews” It stated that they performed a series of tests. What they were able to find was that children’s drawings related symptoms, and the strategies children used to self-manage those symptoms (Linder et al., 2018). Nausea, fatigue, pain, and sadness were the most frequently reported symptoms. Strategies to manage symptoms most often included physical and psychosocial care strategies. In that same reading it states, the purpose of this study was to describe how school aged children with cancer perceive and represent their symptoms and their associated characteristics using draw-and-tell interviews, an arts-based approach (Driessnack, 2006). It continues to state how arts-based approaches, including drawing, provide an alternative to traditional paper-and-pencil–based tools and support recall of information in a developmentally meaningful manner (Driessnack & Furukawa, 2012). The results from the study demonstrated that children frequently depicted their symptoms and the strategies they used to manage their symptoms in the context of how symptoms affected their day-to-day lives. Even if children did not name specific self-management strategy, the drawings of days when they were feeling sick frequently depicted themselves as lying down or reclining, feeling sad, and not being able to engage in their usual activities. They then transitioned into the programming phase and followed by the pilot phase.
A pilot study with 19 school-age children demonstrated the preliminary feasibility and acceptability of the Color Me Healthy app (Linder et al., 2021). Child and parent feedback from this study were then used to further refine the user interface (Linder et al., 2024).
Project purpose
To support the work of creating an electronic health record-integrated app that would allow clinicians to view children’s self-reported symptoms, we sought to understand both how clinicians used the electronic health record during clinical encounters and how they assessed children’s symptoms.
Methods
The setting was the Center for Blood Disorders at Primary Children’s Hospital in Salt Lake City, Utah. How we really got working into the project is that we recruited a Clinician Advisory Team of 7 clinicians, including 3 Doctors of Medicine (MD), 2 Advance Practice Providers (APP), and 2 Registered Nurses (RN). All these clinicians were dealing with young patients with Leukemia Lymphoma, Brain Tumor, and Solid Tumor.
We first started off by conducting 30-minute shadowing sessions where we would observe the workflow of that clinician during that time frame. We would take notes using a template and ask questions during the shadowing sessions to get deeper insight.
After we conducted all our shadowing sessions, we then went on to conduct our follow up interviews. These were 30-minute audio recorded interviews that involved a series of questions read from a script. Once the interviews were complete, they were sent to be professionally transcribed and then sent back to us. Both the shadowing session notes and the transcription from the follow-up interview were read through by three study team members. Statements and phrases from the shadow session notes and interview transcripts specific to the study purpose were extracted for further analysis. An inductive coding process was used to help better document commonalities within the data.
Results
In this section we analyzed data from both the shadowing session data and follow-up interview transcriptions. We organized clinician actions into three sections: pre-encounter, intra- encounter, and post-encounter. Pre-encounter actions were those performed prior to the patient being seen by the clinician; intra-encounter being actions and communication happening between the patient and the clinician; and post-encounter being actions performed by the clinician after the patient had been seen. Separating them into these sections has made it easier to identify the different strategies or methods used during interactions with the EHR or dealing with symptom assessment.
| Pre-encounter | Intra-encounter | Post-encounter |
|
Communicating with other clinicians (in person or through review of past notes) Sometimes writing symptom-related information on sticky notes Anticipation of potential symptoms based on current treatment Appreciation of dynamic nature of symptoms |
Physical examination of patient, potentially focusing on areas of concern noted by other clinicians via past documentation or verbal report Direct communication with patient and parent, including medication use consideration of symptom presentation in the context of how far patient has progressed on treatment timeline Evaluating response to interventions |
Timely documentation of symptoms to ensure accurate report Document assessment and management plan |
Conclusion
To summarize it all, symptom assessment was patient-centered and occurred across all phases of the clinical encounter. We encountered a few limitations during this project. One key limitation seen during the shadowing sessions was that our observations were limited to the workflow of the clinicians on that given day. To elaborate, for some shadowing sessions, we could possibly only encounter pre-visit data while in other shadowing sessions we could see an entire patient care process from start to finish. We are limited to what is at hand at that given time, many of which are out of our control. Additionally, we are also limited to the experiences of the clinicians that we were able to recruit. While most of our clinicians that we studied had similar outcomes and experiences, their experiences may not reflect the experiences of all clinicians within the hospital. To add on, for the interviews, we were also limited to the memory of the clinicians. Clinicians go through numerous patients within a day, it can be hard for them to recall a specific encounter in detail. As a result, there could be times during follow-up interviews where they could possibly forget to bring up important information or information that could cause a change to the data due to them not being able to recall the instance. Project results provide insights into how and when clinician use the electronic health record during the course of a clinical encounter with a patient and how they assess symptoms. The insights gathered will be translated into design specifications as development team begins work on the clinician-facing app.
Acknowledgements:
This work was supported by the University of Utah Office of Undergraduate Research through the Summer Program for Undergraduate Research (SPUR) and the National Cancer Institute (NCI) under award number 1R01CA291977.
Bibliography
Driessnack, M. (2006). Draw-and-tell conversations with children about fear. Qualitative Health Research, 16, 1414–1435. https://doi .org/10.1177/1049732306294127
Driessnack, M. & Furukawa, R. (2012). Arts-based data collection techniques used in child research. Journal for Specialists in Pediatric Nursing, 17, 3–9.
Linder, L. A., Bratton, H., Nguyen, A., Parker, K. & Phinney, S. (2017). “Comparison of Good Days and Sick Days of School-Age Children with Cancer Reflected through Their Drawings.” Quality of Life Research, 26, (10), pp. 2729–2738, https://doi.org/10.1007/s11136-017-1621-6
Linder, L.A., & Wawrzynski, S. (2018). “Staff Perceptions of Symptoms, Approaches to Assessment, and Challenges to Assessment among Children with Cancer.” Staff Perceptions of Symptoms, Approaches to Assessment, and Challenges to Assessment among Children with Cancer, 35(5), pp. 332–341, https://doi.org/10.1177/1043454218767888.
Linder, L. A., Bratton, H., Nguyen, A., Parker, K. & Wawrzynski, S. E. (2018). “Symptoms and Self-Management Strategies Identified by Children with Cancer Using Draw-And-Tell Interviews.” Oncology Nursing Forum, 45(3), pp. 290–300, https://doi.org/10.1188/18.onf.290-300.
Linder, L. A., Newman, A. R., Stegenga, K., Chiu, Y. S., Wawrzynski, S. E., Kramer, H., Weir, C., Narus, S., & Altizer, R. (2021). Feasibility and acceptability of a game-based symptom- reporting app for children with cancer: perspectives of children and parents. Supportive Care in Cancer, 29(1), 301–310. https://doi.org/10.1007/s00520-020-05495-w
Linder, L. A., Utendorfer, H., Oliveros, B., Gilliland, S., Tiase, V. L. & Altizer, R (2024). “Usability Evaluation of the Revised Color Me Healthy Symptom Assessment App: Perspectives of Children and Parents.” Children, 11(10), pp. 1215–1215, https://doi.org/10.3390/children11101215.
