Zooming with the Papettas Family about ENDIA & CGM
Why did the Papettas Family say yes to ENDIA, and to the CGM Study?
Andrew has had type 1 diabetes for 3 years. At the time of diagnosis he was in the army, fit and healthy, so when he was originally told he had type 2 diabetes, he knew that didn’t sound right. Andrew was diagnosed with rheumatoid arthritis 6 months after the diabetes diagnosis. And he is aware now that there is an association between autoimmune conditions like type 1 diabetes and rheumatoid arthritis.
The family heard about ENDIA through CellCare. As Andrew remarked “I just like talking to people, so I really didn’t mind people approaching me about research; I was keen to hear more. The appeal of ENDIA was the ongoing monitoring of Adam and the checking for antibodies [the earliest markers for type 1 diabetes]. Then if anything did come up, we could work with ENDIA, Cellcare or other studies to try and stop things from progressing.” The family saw this as a win-win overall.
ENDIA Nurse, Amanda, approached the family to participate in the CGM study because Adam does not have islet antibodies. The CGM study aims to compare the CGM data between those who have antibodies with those who do not. Adam became the “CGM buddy” for another little boy about the same age who does have antibodies.
Andrew said he didn’t hesitate to say yes. “If this research helps anyone in any little way, then why not? It is not going to affect Adam in any way in the long term, and it just seemed like a nice thing to do for someone in the future potentially. There’s not a lot of research out there about diabetes. So why not feed into that database?”
Emily said “I was a little reluctant at first. But the convincing factor for me was knowing there was a little boy out there the same age as Adam who did have antibodies. If the shoe was on the other foot, we’d want someone to do this for Adam. If anything does happen to Adam, we hope others will think the same. We felt we were lucky to be in this position to be able to help that little boy, or another little boy in some way potentially.”
How was the period wearing the CGM for you and Adam?
Adam’s parents felt their main concern was keeping the transmitter on him. “He’s very fidgety and active. But he was pretty cruisey with it.”
Emily noted that: “Every so often Adam would pull his nappy out and check it out, but then that would be it. Even at kinder he showed it off to staff once, but that was it. He might catch a glimpse of it in the bath but be easily distracted from it. It obviously wasn’t hurting him or bothering him which was great.”
The first time the nurses inserted the sensor, they put on the numbing cream about half an hour before and apparently Adam did not flinch! The second time he was a little more apprehensive. Emily said: “He whinged for about 10 seconds but that was it. I think the clunk sound and wanting to know what the nurses were doing behind him bothered him more. But as soon as the nappy went on and it was out of sight, it was as if it wasn’t even there. Out of sight out of mind.”
They didn’t have any issues with the Dexcom at all. Andrew uses the Medtronic CGM and found subtle differences in terms of sensor calibration, and distance you could take the transmitter and the receiver. They found the Dexcom would vibrate to notify if they had taken the equipment too far away.
ENDIA give a little belt for participants to wear the receiver. However, the family realised with Adam being so young that he’s always near a parent or carer. So they found it worked just as well if they were in the house to leave it somewhere out of reach so he couldn’t touch or play with it and that worked fine. Even the childcare centre worked out they could take it outside if he went out to play or leave it on the cupboard inside the centre; he didn’t actually have to wear it.
The family said that the childcare centre were apprehensive at the start; they initially thought they had to follow Adam around all day. But it actually worked out fine to just put the receiver somewhere near by to him during the day. And once staff realised that, they were totally fine with it and had no real problems with it.
Now you’ve completed the CGM would you do it again?
Andrew said “Everyone has been super accommodating in ENDIA. It’s never felt forced or anything like that.” The family have found the nurses to be really personable, so regardless of where the visit occurred, at home or in the clinic, they’d make a bit of a trip of it and sit to have a nice chat. “When I see the nurses for the visits, I ask a lot of questions of them. I have an enquiring mind, and I also like to help people. I want to know about the research anyway because it’s exciting.”
Emily was probably more reluctant about ENDIA at the start. But it turned out to be far less work and much easier than she thought it was going to be. The food tracking app as opposed to writing it down was much easier. “Everyone’s always on their phones anyway! Why not do something useful with it!?”
“We really didn’t expect the vouchers or anything, but it was still a really nice gesture of appreciation. We were quite happy to tell the nurses to keep them but they said we drove all the way and participated as we have, so we deserved it! So we got something for Adam. There’s been nothing negative about participating in this study in any way” Andrew shared.
After Adam had his CGM removed, Andrew and Emily received the report back a few days later. They said they were talked through the readings over the time Adam wore the CGM. “It was straight up what I wanted”, said Andrew. “It was interesting and it was reassuring. The newsletters and website updates are also really interesting.”
“Whatever you guys need, we’re willing to just carry on. If you keep going until puberty, we’ll be in it.” Andrew stated. “If there’s a possibility the CGM study might be rolled out to more people and for longer, we’d be up for it.”
“I want to know I’ve done everything I can do; I’d feel bad if Adam got my crappy genes. At least I know I’ve done my bit to help prevent it.”
Sincere thanks to the Papettas Family for their time and sharing their experiences of ENDIA and the CGM Study.
Kelly McGorm, Engagement Coordinator, 25/5/21