Latest news: Improving care for autistic people, heart failure detection and type 1 diabetes screening

Report highlights unmet needs in diabetes care for autistic people

A new consultation report published by Diabetes Research and Wellness Foundation (DRWF) and Autek CIC sheds light on the often-overlooked challenges faced by autistic people managing diabetes, drawing on their lived experiences. Released to coincide with World Autism Awareness Day, it reveals the absence of a formal framework for supporting autistic people with diabetes, meaning that healthcare professionals often develop care approaches on an ad hoc basis. 

The consultation was conducted through a series of workshops and interviews with 30 autistic participants living with type 1 or type 2 diabetes, gestational diabetes or prediabetes. Participants described a wide range of barriers to effective diabetes management, including:

• Eating habits and food sensitivities that conflict with dietary advice.
• Needle phobias that affect glucose monitoring and insulin administration.
• Social interaction difficulties that make group education and clinical appointments less accessible.

The report also highlights some less well-recognised traits that can affect care, including:

• Differences in interoception, where body signals relating to hunger, thirst or changes in glycaemia are not perceived.
• Rejection sensitive dysphoria (RSD), characterised by an excessive reaction to perceived criticism.
• Pathological demand avoidance (PDA), which manifests itself as an excessive reaction to seemingly small demands.

These factors can affect how individuals engage with diabetes advice and highlight the need for adapted communication styles from healthcare professionals.

The report emphasises that understanding diabetes management in autistic people requires consideration of both the characteristics of autism and the impact of living in a largely non-autistic world. For example, it was noted that once autistic people form new routines around diet and exercise, these changes can become lifelong. 

DRWF and Autek CIC identify three key priorities for improving diabetes care for autistic people: maintaining momentum with the NHS and other partners; developing autistic-friendly communication resources, including videos; and establishing a research programme to support the development of new person-centred approaches.

The full report can be read here.

Simple screening test may help detect undiagnosed heart failure in diabetes

Trial results indicate that undiagnosed heart failure is common among people with diabetes. Findings from TARTAN-HF suggest that a simple screening programme could greatly improve diagnosis rates and facilitate the earlier initiation of therapy.

Heart failure is a common cardiovascular complication of diabetes but, until now, there has been little evidence to justify widespread screening for the undiagnosed condition. TARTAN-HF is a multicentre, unblinded, randomised controlled trial led by the University of Glasgow. Its primary aim is to assess a targeted screening strategy to detect undiagnosed heart failure in high-risk individuals with diabetes.

The trial recruited over 700 adults aged ≥40 years with an established diagnosis of type 1 or type 2 diabetes and at least one additional risk factor. Participants were randomised to undergo screening for heart failure or to continue with their usual care. Initial findings were presented at the America College of Cardiology Conference in March.

In the intervention arm, screening involved the measurement of NT-proBNP from a blood sample. This widely available test is used to aid the diagnosis of suspected heart failure or to rule it out. Participants with an elevated NT-proBNP measurement (≥125 pg/mL; just under half of those screened) underwent echocardiography and a clinical examination for heart failure. Those receiving routine care were monitored electronically for heart failure events.

Screening detected many previously unrecognised cases, with 24.9% of participants diagnosed within 6 months. By contrast, heart failure was diagnosed in only 1% of the control group.

Of those diagnosed with heart failure, almost all had preserved ejection fraction, which is difficult to detect and often underdiagnosed in primary care. As a result of screening, these participants were more likely to start taking an SGLT2 inhibitor, a class of medication known to be beneficial in heart failure. Use of SGLT2 inhibitors in the screening arm increased from 24% at baseline to 39% at 6 months.

Participants in the screening arm were less likely to experience hospitalisation for heart failure or death than those receiving usual care (3.1% vs 6.8%), representing a risk reduction of 55%.

The extent of unrecognised heart failure in people living with diabetes suggests that targeted screening could significantly benefit the lives and outcomes of people with diabetes by enabling the earlier initiation of appropriate treatments.

European type 1 diabetes screening initiative reaches key milestone

A major European screening initiative for early stage type 1 diabetes has passed its halfway point, with 100,000 children and adolescents having been tested across a number of European countries. The EDENT1FI project aims to screen more than 200,000 young people for islet autoantibodies to identify presymptomatic type 1 diabetes.

Launched in 2023, the programme has expanded screening to Czechia, Poland and Portugal while strengthening existing initiatives in Germany, Italy, the UK, Denmark and Sweden. Researchers say the milestone demonstrates that early stage detection models, first developed in Germany’s Fr1da study, can be successfully implemented across different healthcare systems.

Screening settings vary by country, with programmes conducted in primary care, hospitals, schools and homes. EDENT1FI, however, harmonised autoantibody detection and data collection across all participating sites. Central laboratories and quality control systems now support screening at a rate of around 6500 participants per month.

Project leads emphasise the clinical importance of early diagnosis, especially following the 2026 European approval of teplizumab for children aged 8 years or older with presymptomatic (stage 2) type 1 diabetes. Early detection enables timely monitoring, family support and opportunities for disease modifying therapies that may delay progression to symptomatic (stage 3) type 1 diabetes, when insulin therapy becomes necessary.

In the UK, teplizumab has been approved by the Medicines and Healthcare products Regulatory Agency (MHRA). It is not, however, available on the NHS and NICE is currently considering whether it should be funded for use. 

While EDENT1FI’s progress highlights growing momentum in Europe, the logistical, ethical and financial considerations of population-level screening continue to be discussed. Ultimately, EDENT1FI plans to screen 220,000 children and adolescents across Europe to identify those at risk and to support the development of future preventive treatments.