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Mortality Rates, Treatment Effectiveness, & Lupus

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Are new lupus treatment strategies keeping people healthier? A 42-year longitudinal study found improved health outcomes and decreased mortality for people living with lupus.

Measuring the success of lupus treatments can be a challenge. Though a number of tools have been developed, they often require a combination of laboratory tests and clinician assessments to determine a score. As a result, they may be conducted less frequently. 77% of Lupus Warriors didn’t know how their treatment team measures disease activity in a LupusCorner poll.

One strategy to measure the general success of best practices in healthcare is to look at mortality rates over time. If mortality rates improve, it can be inferred that new strategies of disease management are working for patients. 

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Research on lupus mortality rates

A recently published study in the journal Annual Rheumatic Disease explored mortality rates over time with the help of data from Ontario, Canada area over 42 years. The researchers found significant decreases in two types of mortality rates: all-cause and cause-specific. However, the standardized mortality ratio is still about 3. This means that Lupus Warriors have a 3x higher risk of mortality as compared to people without lupus. 

The data that the study used was large for an SLE study – it was made up of 1,732 patients from the Toronto Lupus Clinic, who were tracked from 1971 to 2013. Many other studies have used this data to conclude that mortality rates are decreasing. But this study further broke it down into deaths caused by lupus and by age, also known as “cause-specific” and “age-specific” deaths. 

A different study looking at 770 Egyptian SLE patients found slightly higher survival rates (97.4% for 5 years and 96.3% for 10 years) with similar causes of death. 

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Different mortality rate statistics in the study

Mortality rates are a way that statisticians look at how many people died over a range of time and how they died. Studies often focus on three different measurements:


All-cause or “gross” mortality

  • How many people died during a time range from any cause of death. This can include heart attacks and accidents not related to lupus.
  • In the study above, this measure went down significantly from 13.5 in the 1970s to 2.2 in the 2010s.


Cause-specific mortality

  • How many of the people in the study died from specific causes.
  • This study measured people who died from causes that could be directly tied to lupus. However, linking a particular cause of death to lupus is challenging as some conditions, like heart disease, can be hard to properly attribute. One study found that around 40% of people that die from lupus will not have lupus listed as the cause. The study accounted for this problem by limiting what they listed under cause-specific mortality to: 
    • organ failure (without other possible causes)
    • kidney failure or damage from lupus nephritis
    • brain damage from lupus
    • lupus-caused bleeding in the lungs
    • lupus-related heart disease.


Age-related mortality

  • Separates the all-cause and cause-specific mortality by age.
  • The study split them up into 10-year intervals from age 15-24 up to ages 85-94. The study says that mortality rates are especially high for the younger brackets (below 40 in this case) but this can be interpreted in different ways. Lupus may be impacting younger populations harder, or more incidences of juvenile onset lupus are being identified early.
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Research in context

Mortality rates don’t tell the whole story. But, they do give us a glimpse into the effectiveness of treatments. 

The risk of death from lupus-related causes is lower than it was 50 years ago. This can be seen in other studies, too. 

What does the higher rate for middle-aged and young adults mean? It may mean that today’s treatment plans aren’t helping the medical problems that younger Lupus Warriors face. Or, it could be a reflection of the prohibitive costs for care.

While these trends are positive, lupus remains a serious (and seriously undersupported) disease. A 2018 analysis explored the Center for Disease Control (CDC) mortality statistics and found that lupus is among the top 20 causes of death for women between the ages of 5 and 64 years old. And, it’s in the top 10 leading causes of death for African American and Hispanic women.

Still, there is reason to be optimistic about the strategies for battling lupus. These insights suggest that new treatment plans are helping. Looking to learn more about strategies for life with lupus? Check out our articles here.

Comments (5)

5 thoughts on “Mortality Rates, Treatment Effectiveness, & Lupus

  1. Some doctors have a tendency to ignore the complaints about pain,, rash, mental fog and other issues that result from lupus. The do a simple blood test and if it doesnt6 scream “LUPUS!” , they are quick to make comments like, “You’re getting older.” Or, “You need more exercise”, “Get more sleep.” Even when you tell them you have been diagnosed with lupus by another doctor, they look at you in disbelief and tell you you are mistaken. They need to listen to us!

  2. `I think all of us who suffer from SLE know on some level that Lupus will most likely be the cause of our death. It doesn’t help with funding that Lupus is not listed as the Cause of death. I’m happy to hear. “We” are living longer and healthier for those years, Still its daunting to “know” what can most likely lie ahead for us. Carpe Diem.

  3. THanks for the mortality inf .I was recently diagnosed with LUPUS Er and with 3rd degree kidney disease. I am 68 .I am wondering what I may expect for an approx. life span. Does anyone have this inf. ?? I know its individual but a general estimate would be helpful THanks

  4. Hi i am suffering from lupus i no longer am able to leep it away . please help me i have children who still need me and I can not even take care of myself/

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