Transitions from pediatric to adult care are significant for individuals diagnosed with and managing long-term, chronic disorders. A smooth, ordered, and well-timed transition from pediatric to adult providers can have a tremendous benefit for an individual’s health if appropriately conducted. Suboptimal transition scenarios can lead to gaps in care, confronting individuals with lasting adverse consequences for their health, and jeopardizing confidence in their physician.
For pediatric patients diagnosed with various neuroimmunologic disorders, including multiple sclerosis (MS), optic neuritis, encephalitis, and others, the Neuroimmunology Clinic in the Brain Care Institute at UPMC Children’s Hospital of Pittsburgh is working to smooth the transitionary period and study the attitudes and opinions of its patients to better meet their long-term care requirements.
Kavita Thakkar, MD, co-directs the pediatric Neuroimmunology Clinic alongside Gulay Alper, MD. A unique aspect of the clinic, and one that speaks to its emphasis on transitions of care, is that Dr. Thakkar sees pediatric and adult patients with neuroimmunologic disorders at UPMC Children's and UPMC Magee-Womens Hospital, respectively.
Dr. Thakkar's dual role and dual pediatric and adult clinics afford her and her patients a seamless transition of care when the time comes to move from child to adult health care providers.
“Our adolescent neuroimmunologic patients are a vulnerable patient population with respect to how and when they transition to adult care. There are many considerations we have to take in to account as physicians to recognize who is most at risk for continuity of care issues, readiness for transition, level of understanding of their condition, degree of dependence on their care takers and other barriers related to their independent functioning," says Dr. Thakkar.
Abrupt changes in care or providers for vulnerable populations such as pediatric neuroimmunologic patients can lead to adverse outcomes.
Physicians need to recognize that even though a patient's age may dictate or indicate a move to adult care, pediatric patients may not yet be ready to take on the challenges and complexities of navigating their own care needs.
“You have to understand that many of these patients have never actively taken part in their health care, having family members or parents attend to every need, even older children and adolescents. Some have no concept of how to think about or understand their long-term goals of care and then make decisions that could have lasting consequences. Some do not even know how to administer their own medications. For these and other reasons, recognizing which patients are most vulnerable to experiencing difficulty is paramount. These individuals must be transitioned slowly. They require more guidance and assurance”.
Changing neurologists, sometimes after many years with the same pediatric neurologist, means it will take time for an adult physician to come to understand their new patient. These patients may be older in age, but they may lack the independence necessary to manage their own health care. Physician who do not recognize this, and have overly aggressive expectations for their patients can set up both conflict and treatment failure.
"One aspect that we pay close attention to in our clinics is how the patient’s underlying disorder can affect executive function and cognition, making it that much harder for them to successfully manage their health care on their own. Having seen many of my pediatric patients in the clinic for some time, when they arrive in the adult practice, I have a good deal of knowledge about their cognitive status and the challenges it poses to these children. Developing trust and knowledge of the patient takes time. The process cannot be shortcut," says Dr. Thakkar.
Transitions in care do not just affect the patient. They can also have far-reaching implications for the patient’s family caregivers.
Abrupt or uncoordinated changes in care can leave parents and caregivers lacking the information they have become accustomed to knowing about, now having to rely on their child to relay all of the information to them about their care and health. This can be a challenge for young patients in general, and particularly those experiencing cognitive issues related to their condition.
Caregiver stress and mental health are aspects of whole-family care that pediatric clinics are attuned to and work to address. Having a complete understanding of the family dynamic and any underlying issues sometimes gives physicians the ability to connect families and patients with needed resources—behavioral health referrals, social work referrals, and other needed help.
“Connecting families to other families in similar caregiving situations has proved to be beneficial. It can help families feel less alone and perhaps more able to seek other support services. It can help them look at the situation with their child more objectively over time,” says Dr. Thakkar
Data being collected by Drs. Thakkar and Alper will ultimately help shape the evolution and expansion of how the clinic functions by tapping directly into patients' opinions on how best they can be supported when transitioning from pediatric to adult care.
“We have a number of projects in progress designed to gauge how best to help these patients navigate the complexities of managing their health with an underlying condition that will likely be with them for life, and in many cases slowly deteriorate or get worse over time. How we prepare our patients for this journey is crucial to their success and ours," says Dr. Thakkar.
Kavita Thakkar, MD, is co-director of the Neuroimmunology Clinic in the Brain Care Institute at UPMC Children’s Hospital of Pittsburgh. She is an Assistant Professor in the Division of Neurology in the Department of Pediatrics at the University of Pittsburgh School of Medicine. Dr. Thakkar earned her medical degree from the Seth G. S Medical College, Mumbai, India. Dr. Thakkar completed both her pediatric residency and pediatric neurology fellowship at UPMC Children’s.
Dr. Thakkar sees patients with pediatric neurological disorders and adult neuroimmunological disorders. Her research and clinical interests focus on neuroimmunological and autoimmune disorders of the brain. In addition, Dr. Thakkar is a part of the child neurology residency education committee and is actively involved in the education of trainees at all levels.