Why sickle cell disease requires multidisciplinary care

Sickle cell disease is a genetic disorder that affects the shape of red blood cells. Due to mutations inherited from biological parents, people with sickle cell disease have a gene mutation that creates red blood cells that are shaped like crescents, or like a farming tool called a sickle.

Called sickled cells, these abnormally shaped red blood cells are much less effective at transporting oxygen, expire within a few weeks (instead of the 120-day lifecycle of a healthy red blood cell), and can also form blockages in small blood vessels, causing an episode called a sickle cell crisis or vaso-occlusive crisis.

A sickle cell crisis can be intensely painful and cause serious complications, including damage to organs (including the brain, lungs, spleen, and kidneys), joint damage, and infections. Preventing sickle cell crises and complications is a major focus of treatment. Repeated episodes can cause accumulated damage to the body.

A multidisciplinary approach to treatment

Treatment for sickle cell disease is usually overseen by a hematologist, a medical doctor who specializes in blood disorders. Because of the many ways that sickle cell disease can affect the body, it’s recommended that treatment involve a multidisciplinary team.

A multidisciplinary team is made up of different providers, each with their own specialty. This can include a primary care provider, a pain management specialist, counselors, social workers, and specialists who treat complications that affect the heart, kidneys, joints, and nervous system.

Another reason this approach is recommended: It will help screen for and treat any coexisting health conditions, which can affect the choice of medications used to treat sickle cell disease.

Even people who treat sickle cell disease with potentially curative therapies like bone marrow transplants or gene therapy require a lifetime of monitoring for side effects of intense chemotherapy, recurrence, and other health issues that can arise following these treatments.

Disparities in healthcare

A multidisciplinary approach to treatment is also one of the ways that healthcare providers who treat sickle cell disease are working to reduce healthcare disparities.

Sickle cell disease predominantly affects Black populations. In the United States, Black communities are disproportionately affected by stigma, inconsistent care in emergency settings, socioeconomic disadvantages, and lack of access to healthcare resources.

All of these factors contribute to worse outcomes for sickle cell disease. Comprehensive care from a multidisciplinary team can involve specialists like cardiologists, pulmonologists, and nephrologists earlier in the treatment process, where appropriate treatment may help improve outcomes.

You are an important part of your healthcare team

It also helps to think of yourself as a part of your healthcare team and to take an active role in your treatment wherever possible. Pain cannot be measured with a test or an exam. During a sickle cell crisis, your healthcare providers rely on you to describe pain, including the intensity, location, and how the pain is responding to medications.

Your healthcare providers also rely on you to detail the ways that sickle cell disease is impacting your life. This includes symptoms like fatigue, low moods, anxiety, and anything in your life that is more challenging because of sickle cell disease. It can help to keep a journal where you track symptoms and challenges.

This is valuable information that only you can provide, information that can help your healthcare team guide treatment.