There is currently a wave of interest in Do-it-Yourself Artificial Pancreas Systems (DIYAPS) but knowledge about how the use of these systems impacts on the lives of those that develop and use them remains limited. Until now, only a select few have been able to give voice to their experiences in a research context. In this study we present data that addresses this shortcoming, detailing the lived experiences of people using DIYAPS in an extensive and diverse way.
An online survey with 34 items was distributed to DIYAPS users recruited through the Facebook groups “Looped” (and regional sub-groups) and Twitter pages of the Diabetes Online Community (DOC). Participants were posed two open-ended questions in the survey, where personal DIY APS stories were garnered; including knowledge acquisition, decision-making, support and emotional aspects in the initiation of DIY APS, perceived changes in clinical and quality of life (QoL) outcomes after initiation and difficulties encountered in the process. All answers were analysed using thematic content analysis.
In total, 886 adults responded to the survey and there were a combined 656 responses to the two open-ended items.
Knowledge of DIYAPS was largely obtained via exposure to the communication fora that constitute the DOC. The DOC was also a primary source of practical and emotional support. Dramatic improvements in clinical and QoL outcomes were consistently reported. The emotional impact on everyday life was overwhelmingly positive. Acquisition of the requisite devices to initiate DIYAPS was sometimes problematic.
The extensive testimony from users of DIYAPS acquired in this study provides new insights regarding the contours of this evolving phenomenon, highlighting factors inspiring people to adopt such solutions and underlining the transformative impact effective closed-loop systems bring to bear on the everyday lives of people with diabetes.
B. Cleal: None. K. Braune: Advisory Panel; Self; Medtronic MiniMed, Inc. Speaker’s Bureau; Self; Dexcom, Inc. S. O’Donnell: None. B. Hauck: Consultant; Self; Bayer AG, Eli Lilly and Company, LifeScan, Inc., Novo Nordisk A/S, Roche Diabetes Care, Roche Pharma. D.M. Lewis: Consultant; Self; Diabeloop SA, Roche Diabetes Care. T.C. Skinner: None. K. Raile: Advisory Panel; Self; Abbott, Lilly Diabetes.