Sindhu Ramchandren, M.D., M.S.
Dr. Ramchandren’s health services research aims to identify treatments for neuromuscular disorders that lead to improved patient-centered outcomes. Her research focus is on the development and validation of outcome measures that can be used in clinical trials and help identify interventions that improve the overall quality of life of patients with genetic neuromuscular disorders and other chronic diseases. She is also interested in developing standards for transitions in care facing adult survivors of childhood neurologic disorders.
- M.D., University of Texas
- M.S., Clinical Research Design and Statistical Analysis, University of Michigan
- B.A., Philosophy, University of Pittsburgh
What are you thinking about?
Thanks to advances in clinical research and improved health care, children with neurologic disorders that used to be fatal in childhood are now surviving into adulthood. However, these adult survivors of pediatric neurologic disorders face many challenges. Few guidelines exist on standards of care for these (now) adult patients, and many adult physicians lack familiarity with childhood neurologic diseases. There is a critical gap in transition of care from pediatric to adult patients in many chronic neurologic disorders. Ignoring this gap makes our most vulnerable population, children with neurologic disabilities surviving into adulthood, susceptible to catastrophic medical complications. I am interested in developing a Transitions Initiative that will advocate for children with neurologic disabilities surviving into adulthood.
Why is this interesting to you?
As an adult neurologist and the Director of the University of Michigan’s Muscular Dystrophy Clinic, I found myself in the unusual position of caring for children when our pediatric neurologist left us. I found excellent pediatric clinical guidelines for disorders that I had limited exposure to since my adult neurology residency. However, I had limited clinical guidelines on the adult care of these same patients (the disorders used to be fatal in childhood). To my surprise, I found a large contingent of adult patients in my ‘pediatric’ MDA clinic now dealing with the long-term sequelae of pain, depression, fatigue, and disability. They were united in their sense of abandonment and many felt adult providers were unfamiliar with their “pediatric” diagnoses resulting in complicated courses for routine hospitalizations; no standard guideline exists for their continued care in adulthood; and research trial opportunities were more abundant when they were young and ambulant. I realized after speaking with my colleagues that similar transition issues plague other chronic neurologic disorders, such as children with developmental delay, and survivors of childhood cancers who now have neurologic complications from chemotherapy, etc.
What are the practical implications for healthcare?
Forming relationships with advocacy groups and increasing awareness for this issue would help in the development of evidence-based clinical management strategies. Personally, I feel we would finally be acknowledging the needs of a vulnerable population who are currently navigating a complex health system on their own.