1. Use of electronic data collection to assess pain in thalassaemia: a feasibility study.
- Author
-
Trachtenberg FL, Martin M, Green S, Oliveros O, Carson S, Gerstenberger E, Allen R, Eile J, and Haines D
- Subjects
- Feasibility Studies, Humans, Monitoring, Physiologic, Data Collection methods, Pain Measurement, Thalassemia physiopathology
- 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 enrollment, 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.
- Published
- 2012
- Full Text
- View/download PDF