Multidisciplinary care and EDS
Resource utilization and multidisciplinary care needs forpatients with Ehlers–Danlos syndrome
Study Summary
This study took a look back at medical records to see how often people with Ehlers-Danlos Syndrome (EDS) use healthcare services and what kinds of specialists they see. They wanted to get a better understanding of the healthcare journeys of people with EDS.
Here's What They Found:
EDS and Healthcare: A Lot of Visits! Compared to folks without EDS, people with EDS tend to use a lot more healthcare services. This includes more visits to their primary doctor, specialists, the emergency room, and even hospital stays.
EDS: It's Complicated (and Multidisciplinary!) Because EDS can affect so many different parts of the body, people with EDS often need to see a bunch of different specialists. This can include orthopedists, cardiologists, neurologists, gastroenterologists, and pain management specialists.
Mental Health Matters Too: The study also found that people with EDS are more likely to experience mental health challenges, like anxiety and depression. This highlights how important it is to take care of mental well-being alongside physical health for those with EDS.
Healthcare Costs Add Up: Because people with EDS use more healthcare services, their healthcare costs tend to be higher compared to those without EDS.
Why It Matters
This study reminds us that EDS is a complex condition that can affect many different parts of the body. It often requires teamwork from a variety of healthcare professionals to provide the best care. This means that having a coordinated care plan that addresses both physical and mental health is super important for people with EDS.
What This Means for Managing Symptoms
Be Your Own Advocate: If you have EDS, it's important to have a primary care doctor who can help you navigate your healthcare and connect you with the right specialists.
Build Your Care Team: Don't be afraid to reach out to different healthcare professionals, including occupational therapists and mental health providers, to address your unique needs.
Become a Self-Care Superhero: Learn and use self-management strategies, like pacing yourself, conserving energy, and managing stress, to feel your best and live your life to the fullest.
Find Community: Connect with other people who have EDS through support groups or online communities. Sharing experiences and learning from others can make a big difference.
Citation
Jones, J., Black, W., Cogan, W., & Callen, E. (2022). Resource utilization and multidisciplinary care needs for patients with Ehlers–danlos syndrome. Molecular Genetics & Genomic Medicine, 10(11). https://doi.org/10.1002/mgg3.2057