More than 95% of people in the U.S. with Down syndrome live more than two hours away from a Down syndrome specialty clinic. That’s why providers like Dr. Brian Skotko, M.D., MPP, and the team at Mass General Hospital are expanding access to Down syndrome care.
Inspired by his own family’s experience, Brian and his team of multi-disciplinary experts collaborated to create the DSC2U.org platform. The program brings the best health and wellness information about Down syndrome to caregivers and primary care physicians around the globe.
In recognition of Down Syndrome Awareness Month, we sat down with Dr. Skotko to learn how this first-of-its-kind technology meets the needs of this underserved population. Continue reading to learn how this program may be a blueprint for other specialty conditions.
Q: What originally sparked your interest in pediatrics and Down syndrome?
I have two marvelous sisters, one with Down syndrome. She inspired me to become a doctor, with the dream of running a Down syndrome specialty clinic one day. Her experience as a patient has also informed much of my work and the research that went into the creation of DSC2U.org
Q: How has her experience influenced your work?Where she lives, it takes her almost two hours to get to care at a Down syndrome clinic. We learned through our research that many primary care providers (PCPs) struggle to treat patients with rare conditions—and are often reluctant to refer to a specialist who could be a far drive away. Many families simply can’t afford this time or expense. So, this led my team and I to explore ways we could democratize specialty care.
Q: How does geography impact one’s care experience?
We learned that even when working with their PCPs, less than 10% of people with Down syndrome are up to date on recommended healthcare screenings. DSC2U is a first-of-its-kind online platform that brings high-cost specialty care to cost-efficient (and often remote) primary care settings.
Q: Is the idea of DSC2U.org to expand your brick-and-mortar clinic to treat patients across the country?
Not at all. I want to be crystal clear. DSC2U.org is not telemedicine. No one will log in online and have an appointment with me or one of our clinicians here. That practice would be neither scalable nor possible with the current healthcare provider laws within the United States.
Instead, DS2CU is a place where families and physicians can access the tools and resources that allow them to get the same level of care available to our patients here at Massachusetts General Hospital. DSC2U is embracing new technology, global technology, increased digital literacy, and leveraging all of that for good.
Q: One patient story on your site says that parents of children with Down syndrome feel marginalized, unseen, and unserved. Why do you think that is?
I think it comes from the simple fact that today’s hardworking PCP just can’t stay current on all the different conditions. I have respect and amazement for primary care doctors—they must be masters of everything. I’m a specialist in one condition and have trouble staying up on everything. So, we hope DSC2U will be a resource for them and a blueprint for other specialty conditions.
Q: How does it work?
Simply stated, parents or caretakers complete an intake form that asks all the Down syndrome-specific questions that matter. When they press submit, all those questions instantly go through the algorithm our team has put together.
They then get two customized checklists. One is for the parents; it says, here’s exactly what we think you should be doing, and here are the resources and links to do it based on your responses.
Then, there’s a companion document they can take to their primary care provider. Essentially, we will turn that primary care provider into a Down syndrome specialist.
Q: Are PCPs reluctant to accept the direction this gives?
PCPs of today want to do the right thing for the patients with Down syndrome. But their busy schedules leave little time to stay updated on everything. They’ve told us they found the plans credible and a great tool to engage in discussions with families to get the right things done. Our research has shown that patients and their families who utilize this tool are more up-to-date and compliant with guidelines than those who don’t.
Q: Any advice on how people should use DSC2U?
Use it now or for a week or two before your annual visit. Because people with Down syndrome have an extra chromosome, there are a lot of conditions that could be brewing under the surface. What we’ve learned as clinicians is how to prevent them from happening or to detect them before they get too big or unmanageable.
One thing we’re trying to motivate families to do is to go back on an annual basis. A week or two before your annual visit, you can have a professional, curated guide to make sure you’re turning that visit into a Down syndrome specialist visit.
Q: Why was partnering with Mass General Brigham Health Plan important?
It was so important for us to partner with Mass General Brigham Health Plan because it set in stone the story that it’s a win/win/win—not only for physicians, not only for families but also for insurers. Everyone is getting better care, and we can deliver it in more cost-effective settings. So, we’re hopeful that other health plans will be able to follow the leadership of Mass General Brigham Health Plan and offer it to their members.
DSC2U is available for free to all members of Mass General Brigham Health Plan. Explore the platform now.
ABOUT DSC2U.ORG
DSC2U provides customized information for people of all ages with Down syndrome. It delivers two reports. One for the patient’s caregivers, and one for the patient’s PCP. Both are designed to optimize their care experience.
- Recommended labs, tests, and procedures
- Potential new conditions/diagnoses to be considered
- Health and wellness resources
- Nutrition suggestions
- Education/therapy resources
- Other information, resources, and supports