Christina Rasco Baggott*, University of California, San Francisco, San Francisco, United States Christine Miaskowski, University of California, San Francisco, San Francisco, United States Track: Research Presentation Topic: Usability and human factors on the web Presentation Type: Poster presentation Submission Type: Single Presentation Last modified: 2012-09-12

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Background: The delivery of optimal supportive care depends on accurate communication between patients and clinicians regarding disease or treatment-related symptoms. In addition, accurate symptom data is required to advance the science of oncologic supportive care. Documentation of patients’ symptom experiences at clinic visits necessitates reliance on patient recall, which may be vague and imprecise. Symptom diaries with daily entries can be used to avoid data inaccuracies due to poor symptom recall. However, patient adherence to data entry in paper diaries is low. Thus our team developed an electronic diary (eDiary) for adolescent cancer patients to record their symptoms.
Objectives: The objectives of this project were to: determine the reliability of the mobile application, the reasons for any missing data, and participants’ adherence rates to daily symptom queries via a mobile phone application; and determine participants’ perceptions of the usefulness and acceptability of symptom data collection via mobile phones after a trial assessment period of an application designed for this purpose.
Methods: Our team developed an electronic symptom diary based on interviews conducted with adolescent and young adult cancer patients and oncology clinicians. This diary included daily severity ratings of five cancer-related sequelae (i.e., pain, nausea, vomiting, fatigue, sleep). The occurrence of selected physical sequelae (i.e., diarrhea, constipation, fever, numbness/tingling, mouth sores, dizziness, headache) was assessed daily. In addition, participants selected descriptors of their current mood. The application was named the mobile Oncology Symptom Tracker (mOST). After the application was beta-tested by clinicians and researchers, 10 adolescent cancer patients participated in a 3 week trial of the eDiary’s feasibility and usability. The participants, and their parents/guardians as appropriate, provided consent/assent for the study. Mobile phones with accessories and monthly service plans were loaned to participants who were instructed to report their symptoms daily at the end of the day. Participants were interviewed at the completion of the study to elicit their perceptions of the eDiary and any technical difficulties encountered. Participants also completed a brief usability questionnaire at the time of the interview.
Results; The participants, 6 males and 4 females, ranged in age from 14 to 21 years, with a wide range of cancer diagnoses. The self-reported ethnicity was Hispanic for a majority (80%) of patients. Overall adherence to daily symptom reports ranged from 91% to 97% (depending on the method of calculation). The participants experienced few technical difficulties during the study. Symptom occurrence rates were high and fluctuated frequently. They reported that recording their symptoms daily was beneficial and that they would recommend that other patients use the application. Symptom occurrence rates were high and considerable inter-patient and intra-patient variability was noted in the symptom and mood reports. This variability cannot be appreciated when symptoms are assessed using one to three week recall periods.
Conclusions: The use of eDiaries is a feasible data collection method and may stimulate valuable insight in patients’ symptom patterns to promote early intervention for symptom management. Electronic diaries may revolutionize the collection of patient-reported outcomes and lead to important discoveries in symptom management.