Strategies for coordinating care for FSGS

Focal segmental glomerulosclerosis (FSGS) is a pattern of kidney damage where there is scarring or hardening in the glomeruli. Glomeruli are tiny networks of blood vessels that remove excess fluid and unwanted substances from the blood as it passes through the kidneys. Each kidney contains roughly one million glomeruli.

When some glomeruli become scarred or hardened, kidneys lose function, and a variety of problems can occur. A person with FSCS may have high levels of protein in the urine (proteinuria), fluid buildup and swelling (edema), high blood pressure, high cholesterol, and weight gain. Damage can become more widespread, leading to end-stage renal disease and kidney failure that requires treatment with dialysis or kidney transplantation.

FSGS can be primary, secondary, or genetic. Primary FSGS has no identifiable cause. Secondary FSGS can be caused by coexisting health conditions, chronic viral infections, the use of certain drugs or medications, injury to the kidneys, and/or coexisting kidney diseases. Genetic mutations that result in FSCS can be inherited or occur on their own.

Treatment for FSGS

There is no cure for FSGS. Treatment focuses on preventing further damage to the kidneys and managing symptoms. Treatment plans often include a combination of medications and lifestyle changes.

Treatment recommendations will depend on the type of FSGS a person has, signs and symptoms, kidney function, and a person’s age and overall health. The management for secondary FSGS focuses on addressing the underlying condition.

The need for multidisciplinary care

Treatment for FSGS is typically overseen by a nephrologist, a medical doctor that specializes in the treatment of kidney diseases. But treatment is often a coordinated effort between multiple healthcare providers, including a primary care provider, nurses, a pharmacist, and a renal dietitian.

Treating secondary FSGS can involve other specialists. Conditions associated with FSGS include diabetes, cardiovascular disease, sleep apnea, obesity, and chronic viral infections like HIV and viral hepatitis.

Coordinating care among your FSGS care team

It's important that the different members of your healthcare team are in communication with one another. This is called care coordination, and it is an important aspect of managing FSGS.

The following are a few strategies that can help:

Work with a specialized team

One of the best approaches is to work with a multidisciplinary team based in a medical clinic that specializes in rare kidney diseases.

However, the healthcare providers a person works with are often dictated by where they live and what healthcare providers are available in that area. A person may need to work with multiple providers working at multiple healthcare offices.

Here are two additional strategies that can help.

Designate one healthcare provider as a point person

Consider designating one healthcare provider as your "point person." This may be your nephrologist or your primary care provider. This provider should maintain an overview of all aspects of care for C3G, including diagnosis information, contact details for other providers, and treatment information.

Maintain a personal health record

Maintaining an organized personal health record can help you ensure all providers have access to necessary information. This file should contain:

• Test results including the results of blood tests and biopsies
• Evaluations and workups from your nephrologist as well as other specialists you’ve worked with
• Treatment records, including medications you’ve been prescribed and medical procedures
• Contact information for all of your healthcare providers
• Insurance information
• Copies of bills, receipts, explanation of benefits documents, and other information related to the financial aspects of treatment

Include your own notes from appointments, questions you’ve asked at appointments, and information provided by healthcare providers.

Keeping this information organized can save time when communicating with an insurance provider or when you see a new specialist who needs information on previous tests and treatments.