Adults with CF-related diabetes say new insulin delivery system eases care
Improvements seen in blood sugar management, weight gain after clinical trial
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In an interview study, adults with cystic fibrosis who also developed diabetes reported that using a new type of insulin delivery system led to wide-ranging improvements in their daily lives, including easier blood sugar management and needed weight gain.
For many, the use of the hybrid closed-loop system — which researchers called “an exciting innovation” — followed years of depending on standard insulin treatments for their cystic fibrosis-related diabetes (CFRD). Data indicate that nearly half of adults with CF will develop diabetes, marked by high glucose or blood sugar levels, as a result of the genetic disease.
In speaking with investigators, many participants — who were testing the hybrid closed-loop insulin delivery system in a clinical trial — described years of treatment burnout and childhood medical trauma before starting on the system. That personal history shaped how strongly they valued no longer having to inject insulin or check blood sugar as often, according to researchers. The participants also reported a perceived reduction in infections with the new system, the team noted.
“Our findings suggest that people with CFrD are a uniquely deserving group for access to [hybrid closed-loop] technology if shown to be clinically and cost effective in this population,” the researchers wrote, noting that many of the reported benefits were seen in patients’ quality of life.
Participants said using the system allowed them to “eat a wider diversity of foods,” and said “they had felt more confident” and “happier,” with one individual saying “it’s like a freedom,” the team noted.
The study, “Participants’ experiences of living with cystic fibrosis related diabetes and using a hybrid closed-loop system to support self-management: qualitative study,” was published in the journal BMC Endocrine Disorders. The work was funded by a grant from the National Institute for Health Research in the U.K., with support from the institute’s Cambridge Biomedical Research Centre.
An inherited condition, CF is marked by the buildup of thick, sticky mucus in the lungs, pancreas, liver, and intestines. Many people with CF eventually develop CFRD, or high blood glucose (sugar) levels due to insulin deficiency and to resistance of the body’s cells to this hormone.
Maintaining blood glucose in a healthy range is especially hard in CFRD because insulin needs change unpredictably with infections and illness, and people with CF also need a high-calorie, high-carbohydrate diet to maintain weight. Uncontrolled high blood sugar triples the risk of death in people with CFRD, so glucose management is taken seriously by care teams.
Patients used insulin delivery system for over 3 months
Here, a research team in the U.K. examined the experiences of people with CFRD using a hybrid closed-loop (HCL) system for insulin delivery. This device combines a continuous glucose monitor, which tracks blood sugar via a skin sensor, with an insulin pump that automatically adjusts doses.
The team interviewed 19 adults who had used the system, called CamAPS FX, for at least three months as part of a clinical trial dubbed CL4P-CF (NCT05562492). The interviews explored life both before and after the system was implemented.
Many participants described their lives before HCL as years of demanding CF treatment routines and, in some cases, an assumption that they would not live long. This sometimes led to neglecting diabetes care.
One participant explained, “I was just at that point in life where I thought what’s the point, it’s not gonna do anything. And I missed injections, I totally didn’t do them at all. … I just thought, I’ve got CF, so why bother?”
For many, starting CFTR modulator therapy or receiving a lung transplant improved their lung function and outlook, which in turn increased their motivation to focus on diabetes management, the team noted.
Despite this renewed motivation, however, participants said keeping blood sugar steady remained frustrating and unpredictable because of how CF affects glucose levels. This left many feeling “desperate” for a solution, in the words of one participant. This individual was reported as being ready to “give the algorithm a go.”
Using closed-loop system made diabetes management easier
After starting the HCL system, participants reported feeling relieved that day-to-day diabetes tasks had been reduced. One said, “It’s just taken the burden of diabetes off the plate. I don’t have to worry about injecting.” Several said this freed up time and energy for hobbies and activities that they had previously thought were unattainable.
A recurring theme was the effect on body image and eating. Many participants had struggled for years to gain or maintain weight because of CF, and some described avoiding snacks or high-carbohydrate meals to avoid extra insulin injections or the risk of low blood sugar.
Several, especially men who combined system use with weight training, reported notable, rapid weight and muscle gains after starting HCL, which they linked to improved blood sugar regulation.
One participant said, “I’ve gone through my whole life being really underweight, really small. … I’ve always wanted to be bigger and stronger. … Gaining this weight has done so much for my confidence.” Others described feeling freer to try new foods without as much fear of a glucose spike or crash.
Participants also reported benefits to their CF itself. This included feeling less prone to lung infections, having more energy and a better mood to manage CF-related tasks such as breathing exercises and/or inhaled medications, and feeling more confident about being physically active because of a lower risk of low blood sugar.
While participants could not always explain the biology behind these observations, some suggested that better blood sugar control might make lung mucus less sticky and easier to clear.
Many participants had medical trauma from CF, diabetes
Finally, many participants described earlier medical trauma from childhood, including repeated hospital stays and invasive procedures such as feeding tubes or central lines. This shaped how they felt about needles and pump tubing, the researchers noted.
One participant recalled, “I remember especially the PEG [feeding tube], because the PEG putting-in was an issue, because they did it under local anaesthetic, so they had to put a tube down my throat, which when you can’t breathe, it is an issue.”
Another patient stated flatly: “I’ve got quite a lot of trauma from previous treatments.”
Because of these experiences, some said their experience with the HCL system could be improved further by using cannulas, or short, flexible tubes inserted directly into a vein, that need less frequent replacement or a tubeless pump design.
Overall, though, the participants saw “distinctive benefits” with the new delivery system, both for their CF and their diabetes, the researchers noted.
“This study is the first to explore experiences of HCL use among people with CFrD,” the team concluded. “Participants reported experiencing improved glucose management, CF-related benefits and wide-ranging quality-of-life gains resulting from HCL use.”
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