Researchers looked at what happens to young adults with cystic fibrosis (CF) when they switch from children’s hospitals to adult care centers. They studied 94 young people ages 18-30 and found that two serious health problems got worse during this transition: blood sugar control and bone strength. Young adults with CF-related diabetes saw their blood sugar levels increase significantly over five years, and nearly half had weaker bones than normal. The study also found that doctors weren’t regularly checking for these problems. This research shows that the transition to adult care is a risky time for young people with CF, and hospitals need better programs to monitor and manage their health during this important change.
The Quick Take
- What they studied: How the health of young adults with cystic fibrosis changes when they move from pediatric (children’s) hospitals to adult care centers, specifically looking at blood sugar control and bone health
- Who participated: 94 young people with cystic fibrosis, ages 18-30, who switched to an adult CF care center between 2013 and 2023
- Key finding: Young adults with CF-related diabetes experienced worsening blood sugar control (increasing from 7.8% to 9.4% over five years), and nearly half of all young adults had weaker bones than expected for their age
- What it means for you: If you or someone you know has CF and is transitioning to adult care, this research suggests it’s especially important to have regular check-ups for blood sugar and bone health during this time. Hospitals should have special programs to help young adults stay healthy during this transition period.
The Research Details
This was a retrospective chart review study, which means researchers looked back at medical records of young adults who had already transitioned to adult CF care. They examined records from 94 patients ages 18-30 who switched to one adult cystic fibrosis care center between January 2013 and June 2023. The researchers tracked these patients for up to 10 years after their transition to see how their health changed over time.
The study focused on two main health problems common in CF: cystic fibrosis-related diabetes (CFRD), which is when CF damages the pancreas and affects blood sugar control, and cystic fibrosis-related bone disease (CFBD), which is when CF causes bones to become weaker and more fragile. The researchers measured blood sugar control using a test called hemoglobin A1c (HbA1c) and measured bone strength using a special X-ray scan called DXA (dual-energy X-ray absorptiometry).
They also looked at how often doctors were actually doing screening tests to catch these problems early. The researchers used statistical tests to compare how patients’ health changed over the five-year period after transitioning to adult care.
This research approach is important because it focuses on a specific vulnerable time in life—when young people move from pediatric to adult healthcare. This transition period is known to be risky for many chronic diseases because young adults may miss appointments or not get the same level of monitoring they had as children. By looking at actual medical records over many years, researchers can see real-world patterns rather than just what happens in controlled research settings.
This study has some strengths and limitations to consider. The strength is that it looked at real patient data over a long period (up to 10 years), which gives a realistic picture of what happens during transition. However, because it only looked at one hospital center, the results may not apply to all CF care centers. The study is also limited because it’s looking backward at existing records rather than following patients forward in time, which can sometimes miss important information. The relatively small sample size of 94 patients means results should be confirmed with larger studies.
What the Results Show
The most important finding was that young adults with CF-related diabetes who were taking insulin showed significant worsening of their blood sugar control. At the start of adult care, their average blood sugar marker (HbA1c) was 7.8%, but after five years it increased to 9.4%. This increase was statistically significant, meaning it wasn’t due to chance. Higher HbA1c numbers mean blood sugar is harder to control, which can lead to serious health problems over time.
The second major finding was about bone health. The researchers found that 47% (nearly half) of all young adults with CF had at least one area of weak bone density. This is concerning because strong bones are important for preventing fractures and staying active. Weak bones in young adulthood can lead to serious problems later in life.
A third important finding was that screening for these problems was not happening regularly. Many young adults did not receive regular glucose tolerance tests (which check for diabetes) or bone density scans (DXA scans). This means many cases of worsening health may have gone undetected during this critical transition period.
The study also looked at how vitamin D status and the use of new CF medications (called highly effective modulators) affected bone density. These secondary findings help explain why some young adults had better bone health than others. The research suggests that vitamin D levels and newer CF treatments may play a role in protecting bone health during the transition period.
This study adds important information to what we already know about CF care. Previous research has shown that the transition from pediatric to adult care is a risky time for many chronic diseases, and this study confirms that CF is no exception. The finding that blood sugar control worsens during transition aligns with what doctors have observed clinically, but this is one of the first studies to document this trend with specific numbers. The high rate of bone problems (47%) is consistent with other research showing that CF patients are at high risk for weak bones, but this study shows this problem may be getting worse during the transition period.
Several limitations should be considered when interpreting these results. First, this study only looked at patients from one hospital center, so the results may not apply to all CF care centers or all regions. Second, the study looked backward at medical records rather than following patients forward, which can sometimes miss important details. Third, the sample size of 94 patients is relatively small, so results should be confirmed with larger studies. Fourth, the study didn’t examine all possible reasons why health got worse—factors like medication adherence, lifestyle changes, or social support during transition weren’t fully analyzed. Finally, because this is a retrospective study, we can’t be completely certain about cause and effect.
The Bottom Line
Based on this research, here are evidence-based recommendations: (1) Young adults with CF should have regular blood sugar screening and bone density scans during the transition to adult care—this is a moderate-strength recommendation based on this study. (2) Hospitals should create special transition programs to help young adults with CF stay connected to care and maintain regular check-ups—this is a strong recommendation based on the clear problems identified. (3) Young adults with CF should work closely with their care team to monitor blood sugar control and discuss bone health—this is a moderate-strength recommendation. (4) Vitamin D levels should be checked and maintained, as this may help protect bone health—this is a moderate-strength recommendation based on the study findings.
This research is most important for: young adults with cystic fibrosis (ages 18-30) who are transitioning to adult care; parents and family members of young adults with CF; CF care teams and doctors; and hospital administrators planning transition programs. Young adults with CF should especially pay attention because this is a time when their health may be at risk. People with CF who are already in adult care should also consider whether they’re getting regular screening for these problems. This research is less directly relevant to people without CF, though it may interest those who work in healthcare or study chronic disease management.
Realistic expectations for seeing benefits depend on the action taken. If young adults start getting regular screening tests, problems can be caught early, which may prevent serious complications. However, improving blood sugar control and bone health typically takes months to years of consistent effort. Young adults might see improvements in blood sugar control within 3-6 months if they work closely with their diabetes care team. Bone health improvements typically take 6-12 months or longer to become noticeable. The key is consistent monitoring and management during this vulnerable transition period.
Want to Apply This Research?
- Track HbA1c test results every 3 months and bone density screening completion annually. Users should log the dates of these important screening tests and set reminders for upcoming appointments. Recording blood sugar readings (if applicable) daily or weekly can help identify patterns and show whether control is improving or worsening.
- Set up appointment reminders for CF clinic visits, glucose tolerance tests, and bone density scans. Create a checklist of screening tests that should be completed each year and share it with your care team. If you have CF-related diabetes, use the app to track blood sugar readings and medication adherence, which directly impacts HbA1c levels.
- Establish a long-term tracking system that includes: (1) quarterly HbA1c results with trend analysis to see if control is improving or worsening; (2) annual bone density scan results with comparison to previous years; (3) appointment completion rates to ensure regular screening happens; (4) medication adherence tracking, especially for insulin or other diabetes medications; (5) vitamin D levels checked at least annually. Create visual graphs showing trends over time to help identify whether health is improving during the transition period.
This research describes what happened in one hospital center and should not be considered medical advice. If you have cystic fibrosis or CF-related diabetes, please work with your own healthcare team to develop a personalized care plan. The findings suggest that transition to adult care is a vulnerable time, but individual experiences vary. Regular screening and communication with your CF care team are important for managing your health. This study was published in 2026 and represents current research, but medical knowledge continues to evolve. Always consult with your doctor before making changes to your healthcare routine or treatment plan.
