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.
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: Robert H Dworkin; Dennis C Turk; John T Farrar; Jennifer A Haythornthwaite; Mark P Jensen; Nathaniel P Katz; Robert D Kerns; Gerold Stucki; Robert R Allen; Nicholas Bellamy; Daniel B Carr; Julie Chandler; Penney Cowan; Raymond Dionne; Bradley S Galer; Sharon Hertz; Alejandro R Jadad; Lynn D Kramer; Donald C Manning; Susan Martin; Cynthia G McCormick; Michael P McDermott; Patrick McGrath; Steve Quessy; Bob A Rappaport; Wendye Robbins; James P Robinson; Margaret Rothman; Mike A Royal; Lee Simon; Joseph W Stauffer; Wendy Stein; Jane Tollett; Joachim Wernicke; James Witter Journal: Pain Date: 2005-01 Impact factor: 6.961
Authors: Dorota T Kopycka-Kedzierawski; Rita Cacciato; Roslyn Hennessey; Cyril Meyerowitz; Mark S Litaker; Marc W Heft; Kimberly S Johnson; Stephanie C Reyes; James D Johnson; Camille T Baltuck; Gregg H Gilbert Journal: J Investig Clin Dent Date: 2019-06-02