Lauri Ann Linder*, University of Utah, Salt Lake City, United States Catherine Fiona Macpherson, Seattle Children's Hospital, Seattle, United States Suzanne Ameringer, Virginia Commonwealth University, Richmond, United States Jeanne Erickson, University of Virginia, Charlottesville, United States Kristin Stegenga, Children's Mercy Hospital, Kansas City, United States Pamela Hinds, Children's National Medical Center, Washington, DC, United States Nancy Woods, University of Washington, Seattle, United States Track: Research Presentation Topic: Consumer empowerment, patient-physician relationship, and sociotechnical issues Presentation Type: Poster presentation Submission Type: Single Presentation Last modified: 2014-06-04

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Background: Nearly 70,000 adolescents and young adults (AYAs) are diagnosed with cancer each year in the United States. AYAs experience multiple co-occurring, interrelated symptoms due to their disease and its treatment that can adversely affect their quality of life. An assessment approach that empowers AYAs to describe their unique symptom experience and its meaning is critical for effective symptom management.
Objective: The primary aim was to evaluate the feasibility and acceptability of an investigator-developed symptom heuristics iPad application, the Computerized Symptom Capture Tool (C-SCAT). The secondary aim was to explore symptoms and symptom clusters (groups of 2 or more related symptoms) identified by AYAs using the C-SCAT.
Methods: The C-SCAT uses an inductive heuristics approach, empowering AYAs to relate their unique cancer symptom experience. From a menu of 30 symptoms, the C-SCAT directs AYAs to drag and drop symptoms experienced within the past 24 hours into a designated area on the iPad screen. Pop-up windows ask about possible causes, alleviating/exacerbating factors, attempted self-management strategies, and the interference of the symptom with daily activities. AYAs can draw arrows to indicate causal and temporal relationships among symptoms and circle clusters of symptoms that they perceive to be related. Additional pop-up windows guide AYAs to provide names for symptom clusters and to identify key symptoms within clusters. The C-SCAT generates a final graphical image featuring individual symptoms, relationships between symptoms, symptom clusters, and priority symptoms within clusters. AYAs completed the C-SCAT 24-96 hours following initiation of a chemotherapy cycle. Evaluation of feasibility included review of completion rates and AYAs’ perceived accuracy of the final image created through the app. Acceptability was evaluated through an investigator-developed survey.
Results: 72 AYAs (median age 18 years) completed the C-SCAT in a mean of 25 minutes. 74% reported the final image was an accurate representation of their symptoms. Most AYAs judged the app questions as clear, instructions as easy to follow, and time to complete as appropriate. 83% endorsed a preference for using the iPad vs. a paper version. AYAs related a greater awareness of their symptom experience and an appreciation for creating a pictorial representation. AYAs reported a median of 8 symptoms (range: 1-21) with 65% identifying the presence of symptom clusters (median 2 clusters; range 1-4). Cluster names reflected AYAs’ perceptions of their treatment (e.g. “chemo effects”), physical aspects (e.g. “appetite-related”), and psychosocial aspects of their cancer experience (e.g. “not myself”).
Conclusions: The C-SCAT empowers AYAs with cancer by shifting the paradigm of symptom and symptom cluster assessment from a deductive to an inductive approach that considers how AYAs interpret and give meaning to their symptoms. The C-SCAT demonstrated feasibility, acceptability, and capacity to generate rich relevant data regarding the individual’s symptom experience. It has potential use in clinical care to foster patient-provider communication about complex symptom experiences and to facilitate symptom management not only for AYAs with cancer, but also for individuals across other age groups and disease states.