Worse life quality seen with patient, physician symptom discordance
Failure to agree happened when symptoms were more severe
People with pulmonary arterial hypertension (PAH) and their physicians hardly ever agree on the severity of symptoms, a study in the U.S., Europe and Japan reveals.
Symptom discordance was more likely when PAH was more severe and was associated with worse health-related quality of life (HRQoL).
“Physicians consistently under-recognized the presence and severity of a broad spectrum of patient symptoms,” the researchers wrote.
The study, “Health-related quality of life and symptom concordance between patients and physicians in pulmonary arterial hypertension in the United States, Europe, and Japan,” was published in Respiratory Medicine.
In PAH, high blood pressure in the blood vessels that carry blood from the heart to the lungs results in symptoms like shortness of breath, fatigue, and chest pain. The disease can make even simple activities, like walking or climbing stairs, increasingly difficult and negatively impacts patients’ quality of life. Poor HRQoL “has also been associated with disease progression in PAH patients, highlighting its importance in disease prognosis and outcomes,” the researchers wrote.
Agreeing on symptoms of PAH
Effective communication between patients and physicians is key to treating PAH. However, studies on whether physicians and people with PAH are aligned regarding symptom burden are scarce. Here, scientists assessed HRQoL in PAH and the discordance in reporting symptoms between patients and physicians in real-world settings in the U.S., France, Germany, Italy, Spain, U.K., and Japan.
Taken together, 293 physicians reported data from 1,189 PAH patients. Among these, 628 patients provided a symptom report and were included in the analysis. Their mean age was 58 and 45% were female.
The study used the EQ-5D Visual Analogue Scale (VAS) of HRQoL and the emPHasis-10 (e10) score, which is a specific quality of life instrument in PAH. In general, lower HQRoL scores were associated with worse (higher) World Health Organization (WHO) Functional Class, a widely used system to measure PAH severity. Health-related quality of life scores were higher in the U.S, and Japan using both EQ-5D VAS and e10 scores.
Patients reported shortness of breath during activity in 57% of cases and physicians in 62%. According to patients and doctors, this symptom had the most significant impact on HRQoL. Fatigue was noted by 55% of patients and 34% of physicians.
The analysis showed slight moderate agreement between patients and physicians. Despite fair agreement on shortness of breath and fatigue, physicians often underestimated the presence of patient-reported symptoms, and agreement on the severity of symptoms hardly ever occurred, as patients almost always reported more severe symptoms than physicians did.
Symptom concordance was more likely at the least severe WHO functional class I (no symptoms when active or resting), particularly with respect to asthenia, which is a lack or loss of strength or energy, chronic shortness of breath, and swelling caused by fluid buildup in the feet, ankles, and legs.
Also, symptom discordance consistently correlated with worse HRQoL scores and worse e10 scores for nearly all symptoms.
“HRQoL measures demonstrated a heavy [quality of life] burden associated with PAH and a high impact in comparison to age-matched general population samples,” wrote the scientists, who said future research should focus on bridging the symptoms discordance gap between physicians and people with PAH. “Providers cannot deliver optimal treatment strategies nor best outcomes if they don’t accurately assess symptom burden in PAH.”
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