Natalie Katz, MD, pediatric neurologist and co-director of Duke University’s Children’s Neuromuscular Program, shares her thoughts on flexible care plans and the importance of addressing mental health in SMA.
Transcript
The standard of care is that patients come in every six months. I think that is changing. And so my clinic patients haven’t necessarily challenged me on it, but I also try and recognize that as you age and become more stable in where things are at in your disease course, that coming into clinic every six months is really cumbersome.
And if you’re in school or working or doing just about anything else in life, coming to the doctor so frequently is not always convenient. And so, working with your provider. Now, I don’t want everybody to go out and say, “Hey, somebody else told me not to come to the doctor every six months.”
I think working on a care plan that works for both you and your doctor is important. I think addressing mental health concerns is not something that we do as much of. A lot of our time with families is spent on addressing your medical needs. And so things like anxiety or ADHD, or learning differences.
Some of those kind of cognitive or mental health-related concerns, I don’t think we do a sufficient job addressing for families because we’re so focused on other things and so not necessarily challenging but I would hope that if a patient or a family has concerns about that, that they would feel comfortable bringing that up to me or to another team member so that we can help them through that as well.
Because it’s a lot to live with SMA and go through this journey your entire life, and so I think making sure we’re addressing all aspects of who you are and not just the things that are pertinent to your SMA is really important.
