The care of patients and families affected by Turner syndrome extends beyond basic medical care. Consideration of multiple medical needs include, but are not limited to: addressing medical, behavioral and developmental concerns; recommendations for corresponding therapies and medical interventions; ongoing medication management; education and genetic counseling about TS and co-morbid disorders; support and recommendations for educational intervention; and advocacy for community disability resources and supports.
The multidisciplinary clinic (MDC) at Children’s Hospital Colorado was developed by providers in May 2015. The aim was to allow families access to various members of the healthcare team in one coordinated visit, to build trust with families, and to facilitate discussion of resources and research available. An MDC model helps eliminate the need for multiple appointments with individual providers, thus allowing better access to care and ability to meet TS clinical care guidelines. At initiation, the TSMDC saw 25 patients in 2015. The clinic initially funded one RN, but an additional RN position was added in January 2018. Since 2018, 508 clinic visits have been conducted. Having an additional RN allows for better triage, better response to patient needs, and better coordination of care between the specialists.
A patient satisfaction survey (n=21) compared a multidisciplinary clinic model versus individual discipline appointments. The data demonstrated that families find the MDC model much more convenient (90%), more efficient (85%), more comprehensive (81%), more personalized (85%). Only 9.5% of respondents expressed an MDC model as much more overwhelming compared to individual discipline appointments.
Audience Take Away Notes:
- How to implement an MDC model that includes nursing for any clinic/discipline
- How to maximize the nursing role and encourage providers to utilize these services
- Barriers to an MDC model