Guidance Will Aid Pediatric to Adult Diabetes Care Transfer

MADRID — A new consensus statement in development will aim to advise on best practices for navigating the transition of youth with diabetes from pediatric to adult diabetes care, despite limited data.

Expected to be released in early 2025, the statement will be a joint effort of the International Society for Pediatric and Adolescent Diabetes (ISPAD), the American Diabetes Association (ADA), and the European Association for the Study of Diabetes (EASD) 2024 Annual Meeting. It will provide guidance on advance transition planning, the care transfer itself, and follow-up. Writing panel members presented an update on the statement’s development on September 13, 2024, at EASD’s annual meeting.

The care transition period is critical because “adolescents and young adults are the least likely of all age groups to achieve glycemic targets for a variety of physiological and psychosocial reasons…Up to 60% of these individuals don’t transfer successfully from pediatric to adult care, with declines in attendance, adverse medical outcomes, and mental health challenges,” Frank J. Snoek, emeritus professor of medical psychology at Amsterdam University Medical College, Amsterdam, the Netherlands, said in introductory remarks at the EASD session.

Session chair Carine De Beaufort, MD, a pediatric endocrinologist in Luxembourg City, Luxembourg, told Medscape Medical News, “We know it’s a continuing process, which is extremely important for young people to move into the world. The last formal recommendations were published in 2011, so we thought it was time for an update. What we realized in doing a systematic review and scoping review is that there are a lot of suggestions and ideas not really associated with robust data, and it’s not so easy to get good outcome indicators.”

The final statement will provide clinical guidance but, at the same time, “will be very transparent where more work is needed,” she said.

Sarah Lyons, MD, associate professor of pediatrics at Baylor College of Medicine, Houston, broadly outlined the document. Pre-transition planning will include readiness assessments for transfer from pediatric to adult care. The transfer phase will include measures to prevent gaps in care. And the post-transition phase will cover incorporation into adult care, with follow-up of the individual’s progress for a period.

Across the three stages, the document is expected to recommend a multidisciplinary team approach including psychological support, education and assessment, family and peer support, and care coordination. It will also address practical considerations for patients and professionals including costs and insurance.

It will build upon previous guidelines, including those of ADA and general guidance on transition from pediatric to adult healthcare from the American Academy of Pediatrics. “Ideally, this process will be continuous, comprehensive, coordinated, individualized, and developmentally appropriate,” Lyons said.

‘It Shouldn’t Be Just One Coversation…It Needs to Be a Process’

Asked to comment, ISPAD president David Maahs, MD, the Lucile Salter Packard Professor of Pediatrics and Division Chief of Pediatric Endocrinology at Stanford University, Palo Alto, California, told Medscape Medical News, “It shouldn’t be just one conversation and one visit. It needs to be a process where you talk about the need to transition to adult endocrine care and prepare the person with diabetes and their family for that transition. One of the challenges is if they don’t make it to that first appointment and you assume that they did, and then that’s one place where there can be a gap that people fall through the two systems.”

Maahs added, “Another issue that’s a big problem in the United States is that children lose their parents’ insurance at 26…Some become uninsured after that, or their insurance plan isn’t accepted by the adult provider.”

‘There Does Not Appear to Be Sufficient Data’

Steven James, PhD, RN, of the University of the Sunshine Coast, Brisbane, Australia, presented the limited data upon which the statement will be based. A systematic literature review yielded just 26 intervention trials looking at care transition for youth with type 1 or type 2 diabetes, including seven clinical trials with only one randomized.

In that trial, in which 205 youth aged 17-20 years were randomized to a structured 18-month transition program with a transition coordinator, the intervention was associated with increased clinic attendance, improved satisfaction with care, and decreased diabetes-related distress, but the benefits weren’t maintained 12 months after completion of the intervention.

The other trials produced mixed results in terms of metabolic outcomes, with improvements in A1c and reductions in diabetic ketoacidosis and hospitalizations seen in some but not others. Healthcare outcomes and utilization, psychosocial outcomes, transition-related knowledge, self-care, and care satisfaction were only occasionally assessed, James noted.

“The field is lacking empirically supported interventions that can improve patient physiologic and psychologic outcomes, prevent poor clinic attendance, and improve patient satisfaction in medical care…There still does not appear to be sufficient data related to the impact of transition readiness or transfer-to-adult care programs.”

‘Quite a Lot of Variation in Practices Worldwide’

James also presented results from two online surveys undertaken by the document writing panel. One recently published survey in Diabetes Research and Clinical Practice examined healthcare professionals’ experiences and perceptions around diabetes care transitions. Of 372 respondents (75% physicians) from around the world — including a third in low-middle-income countries — fewer than half reported using transition readiness checklists (32.8%), provided written transition information (29.6%), or had a dedicated staff member to aid in the process (23.7%).

Similarly, few involved a psychologist (25.3%) or had a structured transition education program (22.6%). Even in high-income countries, fewer than half reported using these measures. Overall, a majority (91.9%) reported barriers to offering patients a positive transition experience.

“This shows to me that there is quite a lot of variation in practices worldwide…There is a pressing need for an international consensus transition guideline,” James said.

Among the respondents’ beliefs, 53.8% thought that discussions about transitioning should be initiated at ages 15-17 years, while 27.8% thought 12-14 years was more appropriate. Large majorities favored use of a transition readiness checklist (93.6%), combined transition clinics (80.6%), having a dedicated transition coordinator/staff member available (85.8%), and involving a psychologist in the transition process (80.6%).

A similar survey of patients and carers will be published soon and will be included in the new statement’s evidence base, James said.

Maahs said that endorsement of the upcoming guidance from three different medical societies should help raise the profile of the issue. “Hopefully three professional organizations are able to speak with a united and louder voice than if it was just one group or one set of authors. I think this consensus statement can raise awareness, improve care, and help advocate for better care.”

De Beaufort, James, and Lyons had no disclosures. Snoek is an advisor/speaker for Abbott, Lilly, Novo Nordisk, and Sanofi and receives funding from Breakthrough T1D, Sanofi, and Novo Nordisk. Maahs has had research support from the National Institutes of Health, Breakthrough T1D, National Science Foundation, and the Helmsley Charitable Trust, and his institution has had research support from Medtronic, Dexcom, Insulet, Bigfoot Biomedical, Tandem, and Roche. He has consulted for Abbott, Aditxt, the Helmsley Charitable Trust, LifeScan, MannKind, Sanofi, Novo Nordisk, Eli Lilly, Medtronic, Insulet, Dompe, BioSpex, Provention Bio, Kriya, Enable Biosciences, and Bayer.

Miriam E. Tucker is a freelance journalist based in the Washington, DC, area. She is a regular contributor to Medscape Medical News, with other work appearing in the Washington Post, NPR’s Shots blog, and Diatribe. She is on X @MiriamETucker.