Duchenne is notorious for its impact on muscles, but the disease attacks practically every system in the body. To help people with Duchenne live the longest, healthiest lives they can, it takes an entire team of doctors working hand in hand. Dr. Brenda Wong is on a mission to deliver comprehensive, coordinated care to her patients. She’s also working to spread awareness of this approach, why it’s important, and how others might replicate it. Earlier this fall, she presented a poster about her clinic “The Duchenne Program at UMass Medical School” at the 2020 (virtual) congress of the World Muscle Society.
For those curious to learn more, we asked Dr. Wong to spend a few minutes telling us about her program and why she’s so passionate about spreading the word on how to deliver this model of care.
Charley’s Fund: First of all, ‘comprehensive, coordinated care’ is quite a mouthful. Can you break it down and say simply what it means?
Dr. Brenda Wong: Certainly. Duchenne is a neuromuscular disease, but it affects almost every system in the body. ‘Comprehensive’ care means that to take good care of patients with Duchenne, we have to pay attention to a lot more than just the skeletal muscles. There are heart and lung function to monitor, issues that can arise in gastrointestinal health, and endocrine involvement such as growth failure, low bone density, and insulin resistance. Patients may need specialized support for neuropsychological and/or mental health issues. Diet and specialized physical therapy are key components for keeping patients healthy and mobile. People with Duchenne even have specific needs when it comes to dental and eye health! And all this is before you get to emergency issues like support for fractures. Comprehensive care means we proactively monitor and manage all these aspects of living with Duchenne.
‘Coordinated’ refers to the teamwork that is implemented by all the different specialists who are involved in the patient’s care. The doctors and specialists need to be in communication and working together. Medical decisions need to be made within the context of the patient’s situation, with all factors taken into account. We bring this together in one seamless, coordinated, personalized experience for patients.
CF: So how do you do it?
Dr. Wong: It’s kind of like a football team. You need a whole team of different players – each good at their particular position. But you also need a quarterback who coordinates the plays and keeps an eye on the whole field. That’s me. I’m barely 5 feet tall and just shy of 90 pounds, but I’m the quarterback!
CF: Tell us more about your role as “quarterback.”
Dr. Wong: My training is in neurology and pediatrics, but what I do on a daily basis is a lot more expansive. Each week I lead a team meeting to review the patients we’ll be seeing that week and plan our “plays.” We review each individual case and what we plan to accomplish during their visit. We also collaborate on a post-visit note for each patient. That way, the family can refer to one organized clinic note that has all the recommendations in one place. That makes it easier to review the guidance and take action on any follow-up steps.
There’s actually a term for what we do – it’s called the ‘Integrated Practice Unit’ or IPU model. We integrate all aspects of care into one patient-focused practice.
CF: From looking at your WMS presentation, the impact of this approach is big – both short-term AND long-term.
Dr. Wong: Yes. Short-term, families have a better experience at their appointments and better near-term health outcomes. They also do better in their long-term health outcomes. I know this from my experience working with Duchenne families for 25 years. But we’re also working to assemble a quantifiable, data-based case through surveys and my IRB-approved registry. That will help us not only encourage more institutions to adopt this model, but also hopefully lead insurance companies to support this kind of care.
CF: That’s a big vision. You know we support it – and are grateful to be working with you to help make it happen. But say more about why you think it’s important.
Dr. Wong: Right now, the insurance system doesn’t recognize the value of this type of care. That means they don’t reimburse for the visits at a rate that encourages and allows other clinics to adopt this model. The Duchenne Program relies heavily on philanthropic support, at least for now (thank you 😊). But we are working to change that and build a model that’s not only best for patients but also financially sustainable. Change is always hard. This is especially true when you’re trying to reform habits and revise systems at large institutions like hospitals and insurance companies.
CF: We know you don’t sleep a lot, but still – how do you make this happen while also caring 24/7 for several hundred patients?
Dr. Wong: This is where the three-way partnership behind The Duchenne Program comes in. My core team at the clinic is grateful to work with you at Charley’s Fund and the UMass Medical School administration. Together, we set the program’s priorities and plans and make sure we have the resources needed to execute. It’s like a three-legged stool where each leg is needed to keep us steady and strong.
CF: Thank you, Dr. Wong. People can view a copy of your poster here. Anything else you want to say to anyone reading this?
Dr. Wong: I do want to touch once again on that analogy of the football game. It’s important to know that while “game time” is the patient’s intense 2-day visit to our clinic (or the telemedicine version of that for some these days), that most definitely is not the only time that our team is working on behalf of that patient and his family. We work throughout the year, keeping in touch with our families and managing whatever care they need when they’re not with us in person. We work with general pediatricians, school psychologists, physical therapists, and lots of other people who are involved in our patients’ care throughout the year. We consider our program a “medical home” for our families. But our goal is to have them “come home” as infrequently as possible – ideally once a year. The rest of the time we work from the home base to manage and coordinate their complex medical needs. What happens between clinic visits is an essential aspect of this care model.