Use of electronic data collection to assess pain in thalassaemia: a feasibility study
Year: 2012
Type: article
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.
Authors: Felicia L Trachtenberg, Marie Martin, Sage Green, Olivia Oliveros, Susan Carson, Eric Gerstenberger, Racquel Allen, Jennifer Eile, Dru Haines
Language: English
Subfield: Genetics
Field: Medicine
Domain: Health Sciences
Open Access status: green
Awards: Thalassemia Clinical Research Network, G329013180, Transfusion Medicine/Hemostasis Clinical Trials Network, Harvard Clinical and Translational Science Center (UL1), Thalassemia Clinical Research Network, Institutional Clinical and Translational Science Award, Thalassemia Clinic Research Network, Thalassemia Clinical Research Network, Canada, Thalassemia Clinical Research Network, Clinical and Translational Science Center (UL1)
OpenAlex ID: W2080201656