Brain MRI Screening in HHT: Why Support Matters Before and After Results
Cure HHT authors a new response to research on brain MRI screening in HHT and highlights an important truth: screening remains clinically important, but patients need clearer communication and better emotional support throughout the process.
Brain MRI Screening in HHT: Screening Still Matters — Support Must Improve
A recent paper by Kofoed et al., “When findings hurt: Mental health effects of cerebral MRI screening in patients with Hereditary Hemorrhagic Telangiectasia,” raises an important concern: receiving abnormal brain MRI results may increase psychological distress, including depressive symptoms, in some people with HHT.
Cure HHT believes this is a meaningful finding — and one that deserves serious attention. Screening is not just a clinical event; it is also an emotional one.
However, we also believe the findings need careful context. In the study, “cerebral findings” included a broad range of abnormalities, many of which may have been incidental or clinically benign. Only four patients, or 2.9%, were diagnosed with brain vascular malformations, and none required intervention. This means the study may tell us more about the emotional impact of receiving any abnormal imaging result than about the specific impact of HHT-related brain VM screening.
That is why Cure HHT’s Director of Research Programs and Grants Cassi Friday, PhD submitted a formal response with the support of Timo Krings, MD, PhD, MSc of Beth Israel Lahey Health. We do not believe this paper should be interpreted as evidence against screening. Instead, we see it as a call to improve how screening is delivered — with clearer counseling, better communication, and stronger support before and after results.
Summary for Healthcare Professionals
Kofoed et al. provide important evidence that cerebral MRI screening in HHT is not psychologically neutral. Their finding that abnormal imaging results were associated with increased depressive symptoms at three months highlights an under-recognized aspect of screening: the emotional burden of uncertainty.
Cure HHT’s response emphasizes that these results should not be interpreted as a reason to reconsider brain VM screening itself. The study’s broad definition of “cerebral findings” grouped together heterogeneous abnormalities, many of which may not reflect HHT-related brain vascular malformations. With only four diagnosed brain VMs and no interventions required, the findings are more consistent with “scanxiety” following abnormal imaging than with a targeted assessment of HHT brain VM screening outcomes.
Current recommendations continue to support brain VM screening at the time of HHT diagnosis, particularly in children, where early detection may prevent serious outcomes including hemorrhage, seizure, stroke, or death. The clinical response should be to improve the screening pathway — not retreat from it.
Pre-test counseling, clear explanation of incidental findings, timely result communication, and access to post-result psychological support should be integrated into HHT screening protocols.
Call to Action:
We invite clinicians, researchers, and HHT care teams to continue this conversation on the Cure HHT Research Network. A question to consider: How can we better preserve the life-saving value of screening while reducing avoidable distress for patients and families?
Summary for Patients, Caregivers, and the General Public
Brain MRI screening is an important part of HHT care because it can help identify brain vascular malformations before they cause serious complications.
But screening can also be stressful. Waiting for results, hearing that something “abnormal” was found, or trying to understand complicated medical language can feel overwhelming.
A recent study found that some people with HHT who received abnormal brain MRI results experienced more depressive symptoms afterward. Cure HHT agrees that this emotional impact matters. Patients should not be expected to simply “be fine” after uncertain or frightening results.
At the same time, Cure HHT does not believe this study means brain MRI screening should stop. Many of the abnormal findings in the study may not have been dangerous or directly related to HHT. Only a small number of patients were diagnosed with brain vascular malformations, and none needed treatment.
The takeaway is this: screening remains important, but patients deserve better support throughout the process.
That means clearer explanations before the MRI, easier-to-understand results afterward, and emotional support when findings are uncertain, abnormal, or scary.
Conversation Starter:
Have you or someone you love experienced anxiety around HHT screening or imaging results? What helped — or what do you wish your care team had explained more clearly? Leave your advice in the blog comments.