Discussion
impaired vision
This cluster randomized pilot study is the first Australian trial embedded in a registry database that explores the feasibility of e-PROMs data capture with feedback to the treating team in a HD population. We were able to demonstrate successful deployment of e-PROMs presented on tablet computers, with use of QR reader codes to correctly verify patients from ANZDATA and link the relevant questionnaire for the participant’s allocation and study timepoint.In this study, the overall response rate of 71% was high when compared with other international studies (36% to 70%) [With regards to HRQoL and symptom scores, our cohort is similar to those reported in other Australian studies of populations receiving HD [This study has several limitations. First, this was a pilot study and inferences about effectiveness of the intervention cannot be made. Second, while the primary purpose of this study was to assess the feasibility of conducting e-PROMs, the fact that new, incident participants were recruited at each time point may have artificially increased the response rate as people may have been more willing to complete a questionnaire initially rather than repeatedly. Third, two private HD sites were unable to obtain local governance permission in time for the pilot, a finding that has been factored in the larger trial to ensure participation from all sectors of HD providers as private units don’t routinely participate in research. Fourth, we do not know the level of nursing support that was received by participants in the control arm, however 55% of participants in the intervention arm required some level of support, which may have included helping patients navigate the survey and overcome technological issues on the tablet, helping patients with impaired vision or dexterity, and arranging additional support via an interpreter or Aboriginal Liaison Officer if needed [