Managing Sickle Cell Disease Includes Addressing Quality of Life for Patients

Three doctors recently got together to discuss how they manage care for their sickle cell disease (SCD) patients. As a part of this conversation, they discussed how they combat systemic issues in care and develop trusting relationships with their patients, establish disease-modifying therapies, focus on quality of life, and consider all aspects of a patient’s life, including their age.

1) Combatting The System

Dr. Lanzkron discusses how critical it is to speak to every patient as an individual and to listen to their current needs, fears, concerns, and joys. They would not seek help if they did not need it, and their voice needs to be heard.

She explains that there are structural factors which have impeded care for some patients. Patients aren’t heard or listened to, and the “standard” of care is applied to all people without examining the individual.

Dr. Lebensburger led the conversation on trust. He explains that trust is the first step. Without it, patients may be fearful of bias, wary to come in for care, and fearful of their provider.

Trust is the necessary precursor for improving patient care.

2) Disease-Modifying Therapies

Many people think of care for sickle cell disease as treating flareups or “events.” What patients truly need are disease-modifying therapies which will improve their lives long-term.

Not only do patients need these therapies, but the sooner they receive them during their care journey the better.

3) Improving Quality of Life

Additionally, an emphasis needs to be placed on quality of life. It’s not just about treating the disease, it’s about assessing how the patient feels.

Part of this is asking questions regarding how the disease is impacting their school, work, relationships, and more.

Sickle cell disease can affect every aspect of life.

4) Considering Age

Dr. Strouse clarifies that the age of the patient must also be considered as a factor. This is important because although some symptoms don’t show up during childhood, it doesn’t mean the complication isn’t there.

For example, microalbuminuria occurs in about a third of all children. However, many of these individuals don’t have renal insufficiency at that age. That said, even if they don’t have renal insufficiency, they often have hyperfiltration, or lower creatine levels than they should.

Sadly, as these patients get older, chronic renal disease develops. Then sickle cell disease also begins to progress in other ways, for instance through worsening anemia.

As a result of this, children need to be treated. If they do not receive care when they are young for all facets of the disease presentation, even those which aren’t visible, they will have much worse outcomes as adults.

You can read more of this conversation on sickle cell disease here.

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