Hospitalizations can seem hard to avoid when battling lupus, co-morbid conditions, infection, and more.
People with lupus often experience many symptoms that seem to come and go. It can be difficult to know when to go to the hospital and when to wait for a a visit with your rheumatologist. Despite this difficulty, data on hospitalizations is being used in new ways to better understand lupus.
One way that this data is being used is to try and understand the prevalence of lupus. Prior research relied on telephone surveys and extrapolations of studies conducted in small geographic areas. A study published in 2007 looked at the rate of hospitalizations in both California and Pennsylvania and accounted for SLE by looking at the hospital discharge diagnosis.
The researchers concluded that between 108 to 150 people have lupus for ever 100,000 people in the United States. And, “roughly 1.8 to 2.5 per 1,000 women.” The researchers note that this analysis was only conducted on people over 18 years old, and that including children would lower these totals.
Part of the math that enabled this estimate was the rate of annual hospitalizations for people with lupus in both California and Pennsylvania. According to the study, 28% and 22%, respectively for the states, of people with SLE are hospitalized every year. The researchers arrived at these numbers by reviewing hospital records (in California) and from patient self-reports (in Pennsylvania).
Take a 1 minute poll on lupus and hospitalizations!
Help other Lupus Warriors. Learn from other Lupus Warriors. It’s win-win!
Exploring hospitalizations and lupus
However, there are fair questions about how transferrable the data on hospitalizations are across geographic areas. A study published in June 2017 looked at all hospitalizations at the University Health Network in Canada. Just 10% of people with lupus were hospitalized each year, dramatically lower than the California and Pennsylvania numbers.
Why so much lower? While neither paper addressed international variability, it is possible to speculate. The Canadian healthcare model, being single-payer and more transparent in out-of-pocket payments, could incentivize people experiencing moderate discomfort to go to the clinic sooner. This could avoid hospitalizations due to gradually worsening symptoms. Regardless of rationale, it does cast some doubt about generalizing US state data to other states because of the variability in insurance markets and public options.
The study method
Setting aside this consideration, the goal of the study was to understand the rate and causes for hospitalizations for people with lupus. The researchers reviewed the charts of 247 people with SLE, examining a period from 2011-2012 and another period from 2013-2015.
The 247 patients were hospitalized a total of 497 times over the course of the review. Each patient averaged 1.6 hospitalizations. And, each hospitalization lasted 8.5 days on average.
13% of hospitalizations included an admission to the intensive care unit (ICU) and 2.8% resulted in death.
The average age of those hospitalized for lupus was 43.9 +/- 17.9 years.
Interestingly, antimalarial use, patient employment, and higher education level were all associated with fewer hospitalizations.
Reason for Hospitalization
- Incidental to lupus
- Active lupus
- Incidental to lupus
- Active lupus
While the above findings are interesting, they do not answer the questions raised above. A previous study may help. Published in 2008, researchers examined hospitalizations of people with lupus SLE in New York from 2000-2002. In particular, the researchers wanted to know how many hospitalizations were avoidable.
Avoidable hospitalizations “could have been prevented by prompt and appropriate outpatient treatment.” Because of this, these measures can be used as a proxy to understand issues in getting medical care to those that need it.
In the study, there were 8,670 patients identified with lupus (SLE). During the three years, those patients were hospitalized 16,751 times. Researchers excluded admissions for childbirth, elective admissions, and transfers from other hospitals.
88% of participants were women. 52% were white; 29% were black. For a full breakdown of participants on a number of criteria including race, hospital admission type, and insurance type, view the report.
2,123 (12.7%) of the hospitalizations were deemed to be avoidable (1,666 people made up the 2,123 visits so some people experienced multiple, avoidable hospitalizations).
The following indications were the most common, avoidable reasons for an admission:
- Cellulitis (19.3% of avoidable admissions)
- Congestive heart failure (23.4% of avoidable admissions)
- Pneumonia (40.1% of avoidable admissions)
Avoidable admissions were most common among older people and those of lower socioeconomic levels. The researchers noted that this could be an indication that there could be barriers to medical care, a lack of patient education, or differences in how/when people search out care.
“[H]aving Medicare was a risk factor, over and above any association with age,” for avoidable admissions. This could be attributed to the fact that people receiving Social Security Disability Insurance are on Medicare, and thees individuals may have a more severe illness. However, it is also possible that the same barriers mentioned above exist for people on Medicare.
These results show further that not every hospitalization for lupus is the same. Decreasing hospitalizations requires a coordinated strategy that enables clinical access for all people, which may currently be lacking. Outpatient visits are cheaper than hospitalizations and considerably less invasive than multi-day admissions. In this way, additional visits with PCPs, rheumatologists, and physician extenders may benefit patients, hospitals, and insurance providers.