Making Intervention Accessible for All Li-Fraumeni Syndrome Populations

Li-Fraumeni syndrome (LFS)—a rare hereditary cancer predisposition disorder—does not discriminate based on factors such as country of birth or socioeconomic status; it is crucial to ensure access to potential intervention and cancer management strategies across all patient populations, according to Michael J. Hall, MD, MS, FASCO.

At the 7th International LFS Association Symposium, Hall spoke about the need to address various barriers to care for patients with LFS.At the meeting, Hall was the session chair of “Barriers to care in LFS” session.

Hall acknowledged how isolating it may be for an individual to receive a diagnosis for LFS, especially if a patient is not familiar with anyone else who has the disorder or lacks medical knowledge of the syndrome. As part of mitigating the gaps and barriers to care in LFS, Hall emphasized how practices should educate patients so that they can understand the disorder and have room to make choices regarding potential intervention. Additionally, he highlighted the importance of being sensitive to the challenges of patients who reside in rural communities or live great distances away from medical centers to help ensure that care is accessible for all populations with LFS.

Hall is a gastrointestinal oncologist, professor and chair in the Department of Clinical Genetics, director of Gastrointestinal Risk Assessment, and co-leader of the Cancer Prevention and Control Program at Fox Chase Cancer Center.

Transcript:

It’s relatively easy to do testing these days, make a diagnosis, and find [patients] who have these syndromes. Managing cancer risk over a lifetime is a much more challenging thing. I was struck by some data that were presented [at the meeting] suggesting that perhaps—if I’m representing the presentation correctly—as risk perception increased, likelihood of exercise or doing things that mitigated that risk perhaps decreased.1 In some of the work my group has done on Lynch syndrome, we found similar things.

The way doctors conceptualize risk, the way we conceptualize the things that we think our patients should do for their risk, and the burden of doing those things is sometimes very different when you are a patient who may feel isolated by a diagnosis. [You] may not know other individuals who have Li-Fraumeni syndrome or another syndrome. [You] may not necessarily be that medically savvy or have any interest in exercising or stopping smoking or other things.

There are gaps and barriers there that we need to spend time as clinicians addressing to make sure our patients understand, and patients have to be given the room to make their own choices. The other thing is that all the stuff we generate in the space [for disorders] like Li-Fraumeni syndrome is great for those who are well plugged-in and have providers who are well plugged-in. But not everyone has that. We have to somehow be sensitive to the challenges of [patients] who live in rural America or [other areas]. Li-Fraumeni syndrome doesn’t discriminate based on what country you were born in or your socioeconomic status. We need to make sure that we are thinking about trying to make the interventions and things that we’re doing reachable for all populations.

Reference

Rising CJ. Psychosocial correlatesof reported physical activity among adults with LFS and their family members from a National Cancer Institute cohort. Presented at the 7th International Li-Fraumeni Syndrome (LFS) Association Symposium; October 19-22, 2024; Philadelphia, PA.