Registry for Better Understanding of ILD (RE-BUILD) Mobile Application

Abstract

Background: Recent Australian data has shown that interstitial lung disease (ILD) patients identify “understanding the causes of ILD and disease progression” among their top research priorities. Patient-reported outcome measures (PROMs) provide important prognostic information. Hence, collection of patient-reported outcome data must be prioritised.                                                                                               

Aims: To develop and assess usability of a native smartphone application for integration with the Australasian ILD Registry. Secondary endpoints include participant satisfaction, usage of the application, feasibility and accuracy of participant-entered data collection.

Methods: In a pilot study, fifty ILD patients ≥18 years old from three Australian centres will be enrolled.  Participants will download the RE-BUILD application and use it for a 6-month period. They will be sent a link to the mHealth App Usability Questionnaire at 1, 3 and 6 months; and telephone interviews will be performed in a subset of 20 participants at 3-6 months.

Results: The RE-BUILD mobile application has been developed by an Australian-based software developer in accordance with University of Sydney and Australian Communications Consumer Action Network guidelines. Preliminary testing by IT developers, health professionals and ILD patients has been conducted. Data collected includes longitudinal pulmonary function tests, medication and supplemental oxygen use and PROM questionnaire scores. Local air quality measurements and physical activity are also recorded.

Conclusions: The RE-BUILD mobile application has now been developed and tested.  Its feasibility and usability will be tested in a pilot study.  We anticipate that it will be a usable and feasible platform for participant data self-collection in ILD.