The #1 Best Practice for Families with Type 1 Diabetes

By Isabel Chin and Adam Brown

Friends For Life tips on being open about diabetes in families, choosing a new pump, updates on diabetes technology

In July, Children with Diabetes hosted its 18^th annual Friends for Life Conference in Orlando, Florida. Hundreds of families gathered to discuss their diabetes experiences – particularly about type 1 and diabetes technology, and to connect with peers and learn from top professionals. The diaTribe Foundation’s Adam Brown moderated a panel discussion with Dr. Irl Hirsch (University of Washington), Dr. Bruce Buckingham (Stanford University), Richard Wood (CEO, dQ&A), and Dr. Frank Martin (JDRF) on best practices for families with diabetes.

The focus on tips for families was critical as diabetes – especially in children – is a condition that affects everybody in the house. See our three biggest takeaways below on optimal family communication, choosing a pump, and research updates.

1. Diabetes should be discussed openly and regularly within families. Sharing within families can include everything from CGM data to feelings toward diagnosis. The conversation needs to be constructive, neutral, and without judgment. Questions are a great way to go – “What can we do to be more helpful? What is unhelpful? What hurts your feelings?”

• “The number one best practice for families with type 1, by far, is having diabetes discussed. The biggest problems in adults with type 1 are the patients who keep everything to themselves and never talk about it. We know all the medical issues are important, but there are also emotional issues. Those are sometimes never discussed. What I often do is for the next appointment, I bring in the other family members. People do better as a team than as individuals.” – Dr. Hirsch

• “Another thing that helps bring people together is the sharing of CGM data. I encourage the spouse, or even the children and grandchildren, to share glucose data…Too many adults don’t want to talk about it. Or they only talk about it when they come in or there’s a bad low and they have to talk about it. Not enough families are open enough with the rest of the family.” – Dr. Hirsch

• Advice on setting boundaries with family when using Dexcom Share, a remote data monitoring service: “I think you just need to sit down with the person with diabetes who needs to decide when they want someone to contact them. It’s hard if you’re the parent and you see your child is low and not to immediately call them up. But you have to give them some time to see if they can bring the glucose up on their own.” Dr. Buckingham 

• “Having a child diagnosed with diabetes is a huge emotional sledgehammer. Most families come together – they start working together, problem solving, and figuring out a routine. In a few families, diabetes tears them apart, and there are even slightly higher rates of divorce. The same thing happens in pediatrics as for adults. Kids who try and hide their diabetes and keep it to themselves and try to hide glucose checking have many more difficulties. We try to get kids from the beginning to present to their class, teachers, etc. that they have diabetes, and that there is nothing to hide. It’s something to live with. To teach others. To be ambassadors and to help other people understand.” – Dr. Buckingham

2. Choosing an insulin pump (or any device) is a matter of personal preference, and with the field evolving rapidly, the market in a few years may look quite different. This is a tough area – definitely seek counsel from your healthcare team and others with diabetes – the online community is a wonderful place to learn.

• Adam’s take: “When people come ask me, ‘What pump should I get,’ I tell them to wait as long as they are comfortable waiting… at least for now. When you get a pump, you’re locked in for four years. There is only one hybrid closed loop option on the market right now (Medtronic’s MiniMed 670G), and there are significant 670G sensor delays for the next six months. In the next two to three years, there are going to be several more closed loop options available. It’s such a big decision to get a new pump, and companies are moving faster in terms of innovating. But when you’re locked in for four years it’s a very tough model for those of us with diabetes. I’m excited that some companies like Tandem are also working on remote software updates for pumps, meaning these decisions are going to become much easier.”

• “From a patient’s point of view, it’s a very personal decision… The only thing I want to really know is whether a patient will wear the device, and once they see it, we can ask, ‘Is this right for you?’ Each pump has its differences … I want you to be happy and comfortable.” – Dr. Hirsch

• “What we do for choosing a device [for Stanford patients] is that we offer a pump class. We show them all the pumps, where they can see what they look like and how they function. It’s the patient’s decision. I agree with Dr. Hirsch about Medtronic’s CareLink software – I have totally relied on it. Software from the other companies has not been great and doesn’t give you good integration with meter and sensor data. It’s very helpful as a provider to have that. I happen to live in the same town as Tidepool, and so we have that too – it’s been a game changer in terms of taking people on different pumps and sensors and integrating the data. It’s really nice to have and makes me more open to whatever pump decision is coming up.” – Dr. Buckingham

3. Research Updates – 670G and JDRF’s Clinical Trials Connection

• An update on the Medtronic MiniMed 670G from the one of the studies’ principal investigators, Dr. Bruce Buckingham: “With [Medtronic’s MiniMed 670 G] closed loop, we are now enrolling down to 5-6 year-olds. At the end of this month we’re doing 2-6 year-olds in closed loop.” – Dr. Buckingham

• “One of the most important things about scientific research is proving it’s true in humans. What we’ve learned in a mouse doesn’t translate into a human. We’ve cured type 1 in a mouse almost 1,000 times. So we rely very heavily on samples from patients. That’s really important to the research… At JDRF, we have developed a tool called Clinical Trials Connection. You can go on there and enter your data, the time of your diagnosis, and your location, and it will tell you the trials that are available near your child.” – Dr. Martin