1. Use of electronic data collection to assess pain in thalassaemia: a feasibility study.
- Author
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L Trachtenberg, Felicia, Martin, Marie, Green, Sage, Oliveros, Olivia, Carson, Susan, Gerstenberger, Eric, Allen, Racquel, Eile, Jennifer, and Haines, Dru
- Subjects
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CHRONIC pain , *AUTOMATIC data collection systems , *AUTOMATION , *INTERVIEWING , *LONGITUDINAL method , *MEDICAL cooperation , *HEALTH outcome assessment , *RESEARCH , *RESEARCH funding , *SCALE analysis (Psychology) , *SCALES (Weighing instruments) , *SURVEYS , *TELEPHONES , *THALASSEMIA , *PATIENT participation , *PILOT projects , *PAIN measurement , *HUMAN research subjects , *DESCRIPTIVE statistics , *DISEASE complications , *DIAGNOSIS - Abstract
Aim: To assess the feasibility of collecting electronic pain data from thalassaemia patients, based on its acceptability and convenience to the participants and study team. Methods: Participants in the Thalassemia Clinical Research Network Assessment of Pain Survey Study completed the Brief Pain Inventory (BPI) quarterly by paper or phone interview. Participants in a substudy completed the BPI Short Form daily over three non-consecutive transfusion cycles through an automated telephone system. Results: The consent rate for the main study was 93%, with 93% retention. The substudy had 75% retention, with more than 75% of scheduled calls completed. Regular monitoring of enrolment, missed calls, data quality, and the performance of the subcontractor for the automated system was crucial to fulfillment of the study goals. Conclusions: Use of electronic data collection for patient-reported outcomes was convenient for both patients and study personnel but required human interactions beyond the automated system to maximise data quantity and quality. [ABSTRACT FROM AUTHOR]
- Published
- 2012
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