Quality of life 'far more important' to patients with sarcoidosis than function, survival
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In the absence of curative or disease-altering therapies, patients with sarcoidosis value interventions that improve their quality of life over those for function or even survival, according to a presenter at the 2021 Congress of Clinical Rheumatology-West.
Sarcoidosis is characterized by granulomas that develop commonly on the lungs and the skin, according to Robert Baughman, MD, professor of medicine at the University of Cincinnati and professor emeritus at the World Society of Sarcoidosis and other Granulomatous Disorders. While sarcoidosis symptoms generally involve granulomas and shortness of breath, there can be a wide range of presentations and severity depending on which organs are involved. It is for this reason that there are more questions than answers about the condition.
“We are still confused about the etiology of sarcoidosis,” Baughman said in his presentation. “I think sarcoidosis is really characterized by the inflammatory response to the granuloma.”
However, he added that environmental and genetic factors may also be at play in the etiology of this disease. But data are insufficient. Guidelines have emerged, but “there really is not enough evidence” to offer true therapeutic recommendations.
“Most patients do well,” Baughman said. However, he noted that some 10% to 30% can have severe complications, with a 5% fatality rate. This often puts clinicians in a quandary about initiating treatment.
“There are really only two reasons to treat sarcoidosis,” Baughman said, paraphrasing his own data set in Expert Review in Clinical Pharmacology from 2018. “They are to avoid danger and improve quality of life.”
The reason for this is that there are currently no approved therapeutic options that can significantly alter the course of the disease. “We now focus on whether they are going to die from their disease or have significant morbidity, or try to improve their quality of life,” he said.
Baughman showed findings from a survey of 1,842 patients with sarcoidosis showing that QoL topped functionality, survival, imaging, adverse events and blood tests as important factors pertaining to their disease. “Quality of life was far more important to patients than any attempts to improve their disease,” he said. “Survival and adverse events were not nearly as important.”
It is for this reason that Baughman believes patients “should have the vote” in the interventions used to manage their disease.
Rheumatologists are generally more accustomed to the type of shared decision-making paradigm than other clinicians, including pulmonologists, according to Baughman. He stressed that as the clinical and research communities attempt to zero in on therapeutic options, there is a key unmet need for the treatment of this disease.
Finding a measure or measures to adequately assess QoL in sarcoidosis could yield improvements in patient satisfaction with their care. “We have quality of life instruments that we use in research, but not for the day-to-day care of the patient,” he said.
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Baughman R. What is new on the Diagnosis, Treatment & Outcome of Sarcoidosis? Presented at: Congress of Clinical Rheumatology-West annual symposium; September 18-21, 2021 (hybrid meeting).
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