Working with PCPs - I
Updated: Dec 3, 2019
An Introduction to Working with PCPs I - II
Sjogren’s patients routinely encounter clinicians who know very little about their disease. When I teach PCPs, they are surprised to find out that Sjogren’s is a common, serious, multisystemic disease. Even among rheumatologists, the disease often remains under the radar. A recent series of four blog posts about Sjogren’s neglect explains why the disease continues to be shortchanged by clinicians.
Nearly every week, patients post in online chat groups about the difficulty of getting good Sjogren’s care. Many are told that there are no treatments, or that Sjogren’s does not need to be followed. Direct disease manifestations -- especially neuropathies, pain and fatigue -- are routinely psychologized and dismissed. The persistence of incorrect ideas about Sjogren’s is astounding. Lack of clinician education harms patients.
The main goal of this website and blog is to provide self-advocacy tools. Much of this involves direct clinician education. Patients should not have to do the educating! Imagine a rheumatoid arthritis patient (similar prevalence to Sjogren’s) needing to provide Clinical Practice Guidelines or research articles to their doctors, including some rheumatologists, because they are not up to date. It is extremely common for patients to hear: “Sjogren’s does not cause X,” even though the particular feature mentioned is a well-documented Sjogren’s manifestation. Right now, this is the reality that Sjogren’s patients face.
The next blog post will provide specific tools for self-advocacy with PCPs. With an increasing shortage of rheumatologists, PCPs and others will need to step up to the plate. Through no fault of their own, most PCPs are unprepared to do this. Early diagnosis and treatment can reduce complications and progression. PCPs who learn about Sjogren’s can do a lot to help patients.
Sjogrens Advocate was created for both patients and PCPs. The tools for PCPs, especially the Key Articles and Clinical Practice Guidelines can also be used with rheumatologists. Rheumatologists are the specialists responsible for taking the lead in Sjogren’s care. Due to time constraints, disinterest, and other factors, this may not happen. There will be more specific tools for working with rheumatologists in the upcoming months.