How healthcare providers can best collaborate with their patients
Susan Perlman, MD, discusses how healthcare providers can best collaborate with Friedreich’s ataxia patients and their families to ensure open communication and shared decision-making.
About Susan Perlman, MD
Susan Perlman, MD, is a clinical professor of neurology and the director of the Ataxia Center at the UCLA Medical Center in Los Angeles. Her specialty is ataxias, including Friedreich’s ataxia. She is also the director of clinical trials in UCLA’s Program in Neurogenetics and sits on the Medical and Research Advisory Board at the National Ataxia Foundation.
Transcript
Certainly in Friedreich’s ataxia, it’s a multisystem disease. It involves neurologic systems, central and peripheral. It involves cardiac symptoms. It involves endocrinologic areas as well as orthopedic areas.
So whoever is going to be the leader of the team — and it usually ends up being the neurologist, the pediatric neurologist, or the primary care provider — they, number one, have to make sure that all these other disciplines are brought into the arena so that we can all make sure visits are kept and recommendations are discussed and implemented.
So I always sit down with my patients and their families, for the pediatric ones, and discuss each thing that they have to take into awareness, to follow up with cardiology once a year, to see orthopedics during the growth phase, to work with other specialists that might be appropriate.
And then at every follow-up visit, I go through the checklist: “Did you do this? Did you do that?” I encourage them to message me so that I can respond to them right away. “We saw our cardiologist, he mentioned something of concern. Do I have to worry about this?” So I think it’s open lines of communication and reinforcing the need for a team.
David Lynch, MD, PhD, is the director of the Friedreich’s Ataxia Program at Children’s Hospital of Philadelphia.