Porphyria Linked With Significant Financial and Healthcare Burden in US

Porphyria is associated with a significant financial healthcare burden in the United States, which is driven mainly by hospital admissions, outpatient visits, and medical bills, a study reported.

The study, “Healthcare Utilization and Cost Burden of Porphyria in Commercially Insured Adults in the United States,” was published in the journal PharmacoEconomics – Open.

Porphyria comprises a group of eight rare metabolic disorders caused by defects in enzymes involved in the production of heme, a molecule required for oxygen to be transported in red blood cells and for the breakdown of certain compounds in the liver.

Estimates indicate that 200,000 people have porphyria in the U.S. Studies in Europe report that porphyria cutanea tarda (PCT), the most common form of the disease, affects 1 in every 10,000 individuals.

Due to its negative effects on the liver and the possibility of permanent clinical complications, porphyria is associated with higher mortality and morbidity risks.

Researchers at Rutgers University, Robert Wood Johnson Medical School, for this reason, addressed the economic and healthcare utilization impact of the disease using real-life claims data from patients with commercial (private) insurance.

Data examined covered 2,788 people with porphyria, whose healthcare records had been stored at the Truven Health MarketScan Commercial Claims database between January 2010 and December 2015.

Researchers then matched these patients to 2,788 people with chronic liver disease but not porphyria, serving as controls.

Total and specific healthcare services were analyzed for the year before and after a porphyria diagnosis. In controls, healthcare utilization and costs were also analyzed over the course of one year following a randomly selected date.

Statistical analyses were conducted to compare healthcare service utilization and associated expenses between the two groups.

Results showed the total number of claims per porphyria patient increased in the year following diagnosis, compared with the previous year (39.67 vs. 35.94). The same was observed for healthcare-related expenses per patient — $27,270 vs. $21,308.

In the year following diagnosis, the number of hospital admissions rose (1.75 vs. 1.42), as did the number of outpatient visits — 21.41 vs. 19.36 — and pharmaceutical claims (15.84 vs. 14.48), compared with the year preceding diagnosis.

In the year after diagnosis, porphyria patients also had a higher number of claims compared with control patients (39.67 vs. 34.81), mainly due to their higher number of hospital admissions (1.75 vs. 0.87) and outpatient visits (21.41 vs. 17.98). The average length of inpatient stays was also longer in porphyria patients, 1.8 vs. 0.78 days.

A similar trend was observed for total healthcare costs, with patients with porphyria spending $7,839 more than controls in the year after a diagnosis. Healthcare expenses associated with hospital admissions ($8,882 vs. $4,674) and outpatient visits — $12,378 vs. $9,801 — were also higher in those with porphyria than patients without it.

“Our retrospective, population-based claims analysis suggests that porphyria imposes substantially higher healthcare cost and utilization burdens compared with matched controls within a year of disease diagnosis. The burden is mostly due to increased inpatient admissions, outpatient visits, and pharmaceutical claims,” the investigators wrote.

Additional research is needed to assess healthcare utilization and associated costs in patients with specific types of porphyria, they added.