Parent-Practitioner Collaboration Sparks New, Multidisciplinary Approach to Down Syndrome Care

An enhanced, family-focused clinic at Nationwide Children’s Hospital now offers appointments with multiple specialists in a single-location, single-day clinic.

Even before birth, Down syndrome is a condition that demands the attention of multiple medical specialties. From geneticists and neonatologists to the cardiologists who often have to evaluate congenital heart defects in this special population, optimal care demands a team approach. Now, families facing a Down syndrome diagnosis have a home for ongoing care after birth: the comprehensive Down Syndrome Clinic at Nationwide Children’s Hospital.

“Down syndrome is a condition that really has to be approached holistically,” says Garey Noritz, MD, section chief of Developmental and Behavioral Pediatrics and division chief of the Complex Health Care Program at Nationwide Children’s. “The needs of individuals and their families change over time — from infancy through adolescence and into young adulthood — and no single provider can address all of that alone. Coordinated, team-based care makes an enormous difference for families who are already juggling a lot.”

Nationwide Children’s embarked on a journey to craft the improved program after receiving feedback from families in the community about their desire for a more robust approach to care. The team met with focus groups and advocacy organizations, solicited input on desired features of the new program and worked with hospital administration to obtain dedicated clinic space.

“What became clear through conversations with families was the need for flexibility across the lifespan,” says Murugu Manickam, MD, PhD, FACMG, section chief of Genetic and Genomic Medicine and co-director of the Down Syndrome Clinic at Nationwide Children’s. “The care a child needs at birth looks very different from what’s needed in adolescence or young adulthood. Building a clinic that can evolve with those needs was a major goal.”

The result has been a total transformation in the clinic’s ability to coordinate care and a thoughtful segmentation of clinic days and attending specialists according to life stage, including infancy, early childhood, adolescence and the transition to adulthood.

“Now almost all appointments are multidisciplinary team evaluations,” says Patricia L. Nash, MD, medical director of the Down Syndrome Clinic at Nationwide Children’s. “They include the primary provider, occupational, physical and speech therapists, along with developmental psychology and adolescent medicine. This model streamlines care and allows families to consolidate appointments into a single visit, reducing travel time, missed work and missed school.”

The clinic also offers on-site audiology assessments and same-day sessions with occupational, physical and/or speech therapists in a space tailored to the needs of the Down syndrome population.

“When families come to clinic now, it’s not just my perspective shaping the visit,” says Mark Wells, MD, a general pediatrician with special interest in the care of children with Down syndrome at Nationwide Children’s. “It’s input from the therapists, psychologists and care coordinators all in real time. That team-based approach allows us to look at the whole person in front of us — not just one developmental or medical concern — and create a more complete plan together.”

Looking ahead, the team hopes to further expand the clinic’s services by integrating nutrition and dietitian support, continuing to strengthen adolescent and adult transition services, and growing the program’s research involvement to help address unanswered questions in Down syndrome.

“Our partnership with families is meant to be ongoing,” says Dr. Noritz. “This wasn’t a one-time effort where we gathered feedback and moved on. We’re continuing to ask families what’s working, what’s not, and what more we can do, because the program will keep getting better the more families are involved.”

Despite the recency of the clinic’s changes, the Ohio Down syndrome community has already taken notice. The Down Syndrome Association of Central Ohio (DSACO) awarded the program its DSACO Impact Award in February to recognize its commitment to coordinated, family‑centered care.

“To receive the DSACO Impact Award was incredibly meaningful and completely unexpected,” says Andrew Page, operations manager for the Down Syndrome Clinic and other programs at Nationwide Children’s. “We never set out to win an award — we were focused on improving care. But being recognized by the Down syndrome community for that work was deeply humbling. It reflects the effort of a lot of people who care deeply about these families.”

Image Credits: Adobe Stock, Nationwide Children’s