Care coordination for severe hypertriglyceridemia

Hypertriglyceridemia is the medical term for elevated triglyceride levels. Triglycerides are a type of fat that the body gets from the foods a person consumes. The body uses triglycerides when it needs an energy source between meals. Higher than optimal levels of triglycerides increase a person’s risk of cardiovascular disease.

Severe hypertriglyceridemia is the term for triglyceride levels that far exceed healthy numbers. Optimal triglyceride levels are less than 150 milligrams per deciliter of blood (or mg/dL, one thousandth of a gram in one tenth of a liter).

Severe hypertriglyceridemia involves levels above 500 mg/dL, in some cases higher than 1,000 mg/dL. Triglyceride levels that are this high come with additional health risks and complications, including acute pancreatitis. Acute pancreatitis is inflammation of the pancreas, a serious and potentially life-threatening complication that requires immediate medical treatment.

What healthcare providers treat severe hypertriglyceridemia?

Treatment for severe hypertriglyceridemia often involves working with several healthcare providers. Reasons for this include:

• The condition often occurs as a result of multiple factors. These can include genetics, coexisting/underlying conditions, and medications.
• It can involve and impact multiple organs and systems in the body, including the heart, blood vessels, liver, pancreas, and kidneys.
• Lowering triglyceride levels and preventing pancreatitis are the goal of treatment. Treatment plans may also focus on managing other numbers, including cholesterol levels, blood glucose levels, blood pressure, and weight.
• Treatment plans typically include a combination of medications, following a very low-fat diet, other lifestyle interventions, and managing coexisting conditions.

Treatment for severe hypertriglyceridemia typically includes a lipidologist, a medical doctor that specializes in cholesterol and lipid disorders. Depending on the underlying causes and treatment needs, care teams also often include a cardiologist, endocrinologist, gastroenterologist, registered dietitian, and genetics counselor. Primary care providers often play a central role in treatment. The need for psychological and social support from counselors and/or social workers should not be overlooked.

A pharmacist is a valuable resource for information about medications, dosing, and potential drug interactions when taking multiple medications.

The need for care coordination

Care coordination refers to the ability of your healthcare providers to communicate with one another and share information about your diagnosis and treatment.

For example, if you’re working with a cardiologist and endocrinologist to manage triglyceride levels alongside type 2 diabetes, each of these providers needs to know what the other has prescribed for treatment. This ensures the different parts of a treatment plan work together and do not interfere with one another.

One of the best ways to ensure effective care coordination is to work with a specialized team based in a single hospital or medical center.

However, many people need to work with providers based in separate locations, and care coordination can require more work and organization. Here are two strategies that may help.

Designate one healthcare provider as a point person

One healthcare provider should have an overview of your treatment, including medications you are prescribed, your dietary guidelines, and your complete diagnosis and medical history. This provider should have contact information for all healthcare providers you are working with.

Maintain a personal health record

Keep a file of all information related to your diagnosis and treatment. Keeping all relevant information in one place will make it easier to share information with your providers, your insurance company, and any new specialists you need to see.

This is sometimes called a personal health record. It should include:

• Results of any diagnostic tests, including lipid panels
• Evaluations and notes from your healthcare providers
• A current list of all medications, doses, and any supplements you take
• Records from any hospitalizations or emergency department visits
• Contact information for all members of your healthcare team
• Insurance information and copies of relevant financial documents, including bills, receipts, and explanation of benefits (EOB) statements
• Your own notes used to prepare for appointments or written during/after appointments

It’s also recommended to keep a journal. Record daily notes on symptoms, mood, energy levels, sleep, exercise, and what you eat. Also record any medications you took and at what time, and if you’ve had any difficulty taking a medication. This is information you can share with your providers.

You may also consider bringing along a trusted loved one or family member to your appointments to take notes and provide support.

Treating a condition like severe hypertriglyceridemia is a long process that involves consistency and many small decisions. A journal can help you keep track of what you’ve been doing, recognize unmet treatment needs, and take an active role in your care.