The Importance Of The Nurse Role In A Turner Syndrome Multidisciplinary Clinic
Submitted by Karen Regan BSN, RN Rosemary O'Dell MSN, RN
Tags: clinicals patient assessment patient care practic support
According to the recently published 2024 clinical practice guidelines2, the prevalence of Turner syndrome (TS) is 50 per 100,000 females worldwide. This article will focus on the female patients seen in our clinic. Of note, we do follow several male patients with TS. The providers in our clinic have been advocating for the recognition of male patients with TS at the international level.
A TS multi-disciplinary clinic (MDC) was developed by a team of medical providers at a large metropolitan Children’s Hospital in 2015. This care model was requested by the local TS support group and families of TS patients in the endocrinology clinic. The aim of the MDC was to provide access for patients and their families to various members of the healthcare team and services in one coordinated visit. The clinic was initially coordinated by a genetic counselor. The care team included endocrinology, cardiology, neuropsychology, psychology, developmental pediatrics, and genetics. They saw an average of 45 patients per year for the first three years. As the clinic evolved and services needed to be expanded, the coordinator role was transferred to a registered nurse in 2018.
The nurse coordinator functions as the gatekeeper to the clinic. A smartphrase was developed to assist with triaging the patient needs for TSMDC in accordance with the clinical practice guidelines. Nursing provides a more robust knowledge base of patient needs both medically and psychologically. As nurses, we are trained to care for the whole person and family as a unit. This perspective allows for better identification of non-medical concerns that also need to be addressed and acknowledged by the care team during visits.
Once a patient is scheduled, the nurse communicates each patient needs to providers prior to clinic. These summaries include recent labs, radiologic testing, school testing, medications, and parental concerns. The nurse coordinator assists with scheduling echocardiograms, MRIs and ultrasounds prior to clinic as needed. Providers often have questions prior to clinic that they ask the nurse to address to help make the clinic day more efficient.
Currently TSMDC is held once or twice a month, with patients scheduled in the morning and afternoon. Most patient appointments are 2-3 hours in length. An average of 10-12 patients are seen at each clinic, with the summer months being busier due to out-of-state patient availability. A team meeting occurs over the lunch hour to discuss patient needs and recommendations. The nurses are tasked with managing patient flow throughout the day, educating patients and families on prescribed therapies, relaying follow-up information and next appointments, providing community resources to patients and families for TS management, and compiling provider notes and recommendations in an organized team note. Living with TS has many challenges and the need for appointments throughout the lifespan. Nurse coordinators can provide a medical home for patients and families to help keep track of what is needed to maintain physical and mental wellbeing.
As of 2018, otolaryngology, audiology, sleep psychology and research assistants have been added to the MDC. We have also increased the number of endocrinologists and cardiologists that see patients in our clinic. In 2024, 145 patients were seen in TSMDC due to better triage and scheduling. Audits of TSMDC patient charts show that most clinical practice guidelines are being met at 90% or higher. Nursing oversight helps facilitate adherence to the TS clinical practice guidelines among the care team.
In conclusion, nurse coordinators play a vital role in patient care through the MDC model. Healthcare organizations should be encouraged to develop these career paths to help maximize efficiency of patient and provider time, increase patient accessibility to care, and help prevent unnecessary health care costs due to disjointed or repetitive care.