Here is a Twitter thread from poster 78-LB at #ADA2019, Detailing the Lived Experiences of People with Diabetes Using Do-it-Yourself Artificial Pancreas Systems - Qualitative Analysis of Responses to Open-Ended Items in an International Survey.
Introduction:
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 build and use them remains limited. #ADA2019
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. #ADA2019
Methods:
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). #ADA2019
2 open-ended Qs were posed, garnering personal DIYAPS stories; including knowledge acquisition, decision-making, support & emotional aspects in DIYAPS initiation, perceived changes in clinical & quality of life (QoL) outcomes after initiation, & difficulties encountered #ADA2019
Results
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 primarily obtained via exposure to the communication fora that constitute the DOC. #ADA2019
The DOC was also a primary source of practical and emotional support (QUOTES A). #ADA2019
Dramatic improvements in clinical and QoL outcomes were consistently reported (QUOTES B). #ADA2019
The emotional impact was overwhelmingly positive, with participants emphasizing that the persistent presence of diabetes in everyday life was markedly reduced (QUOTES C). #ADA2019
Acquisition of the requisite devices to initiate DIYAPS was sometimes problematic and some people did find building the systems to be technically challenging (QUOTE D). #ADA2019
Overcoming these challenges did, however, leave people with a sense of accomplishment and, in some cases, improved levels of understanding and engagement with diabetes management (QUOTE E). #ADA2019
#ADA2019 Also, see this word cloud generated from 665 responses in the two open-ended questions in the survey:
Conclusion
Extensive responses from users of DIYAPS provides new insights, highlighting factors inspiring people to adopt such solutions and underlining transformative impact effective closed-loop systems bring to bear on the everyday lives of people with diabetes. #ADA2019
There is much to learn from those who have taken this route, and life-changing results they have achieved should inspire all with an interest in APS to pursue and dream of a future where all people with type 1 diabetes can reap the benefits that it potentially provides. #ADA2019
(You can find a longer form copy of this poster content, and all other posters co-authored by @danamlewis at bit.ly/DanaMLewisADA2…)
• • •
Missing some Tweet in this thread? You can try to
force a refresh
1/ What if there was a tool to help identify who might have exocrine pancreatic insufficiency (EPI/PEI)?
EPI is a significant issue for many people with diabetes (likely more common than gastroparesis or celiac).
Here's how such a tool can help PWD👇🏼🧵
#ADASciSessions #ADA2024
2/ The Exocrine Pancreatic Insufficiency Symptom Score (EPI/PEI-SS) has 15 symptoms, rated by how frequent they are and how bothersome they are (aka severity).
n=324 ppl participated in a real-world survey.
n=118 were people with diabetes (PWD)!
#ADASciSessions #ADA2024
3/ Methods:
EPI/PEI-SS scores were analyzed and compared between PWD (n=118), with EPI (T1D: n=14; T2D: n=20) or without EPI (T1D: n=78; T2D: n=6), and people without diabetes (n=206) with and without EPI.
📣 Presentation of the primary outcome results from the CREATE Trial, which assessed open source automated insulin delivery (AID) compared to sensor-augmented pump therapy (SAPT) in adults & kids with T1D, at #ADA2022!
The CREATE trial aimed to study the efficacy and safety of an open source automated insulin delivery system, with a large scale, long term randomized controlled trial.
I just realized it's been 3 (!) years since I published my book on automated insulin delivery, with the goal of helping increased conversation and understanding of AID technology for people with diabetes, their loved ones, and healthcare providers!
I'm still very proud that it is available to read for free online, free to download a PDF (both of which have been done thousands of times each: ArtificialPancreasBook.com), or as an e-book, paperback, and now hardback copy. Proceeds from the purchased copies go to Life For A Child.
And, more recently, it has also been translated into French by the wonderful Dr. Mihaela Muresan and Olivier Legendre!
The French translation is available in Kindle, paperback, hardback, or free PDF download formats as well.
1/THREAD - my presentation is kicking off at #EASD2020 about open source automated insulin delivery.
(You can see a full version of my presentation here: bit.ly/DanaMLewisEASD…, or read the summary below!)
Note we should differentiate between open source (where the source of something is open), and DIY (do-it-yourself) implementations of open source code. Open source means it can be reviewed and used by individuals (thus, DIY or #DIYAPS) or by companies.
Poster 988-P at #ADA2020 by Jennifer Zabinsky, Haley Howell, Alireza Ghezavati, @DanaMLewis Andrew Nguyen, and Jenise Wong: “Do-It-Yourself Artificial Pancreas Systems Reduce Hyperglycemia Without Increasing Hypoglycemia”
This was a retrospective double cohort study that evaluated data from the @OpenAPS Data Commons (data ranged from 2017-2019) and compared it to conventional sensor-augmented pump (SAP) therapy from the @Tidepool_org Big Data Donation Project. #ADA2020
One month of CGM data (with more than 70% of the month spent using CGM), as long as they were >1 year of living with T1D, was used from the @OpenAPS Data Commons. People could be using any type of DIYAPS (OpenAPS, Loop, or AndroidAPS) and there were no age restrictions. #ADA2020
Poster 99-LB at #ADA2020 by @danamlewis, @azure_dominique, and Lance Kriegsfeld, “Multi-Timescale Interactions of Glucose and Insulin in Type 1 Diabetes Reveal Benefits of Hybrid Closed Loop Systems“
Background - Blood glucose and insulin exhibit coupled biological rhythms at multiple timescales, including hours (ultradian, UR) and the day (circadian, CR) in individuals without diabetes. But, biological rhythms in longitudinal data have not been mapped in T1D. #ADA2020
It is not known exactly how glucose and insulin rhythms compare between T1D and non-T1D, and whether rhythms are affected by type of therapy (Sensor Augmented Pump (SAP) or Hybrid Closed Loop (HCL)). #ADA2020