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Study Reveals Significant Gap Between PAH Patient and Physician Symptom Assessment

  • A new international study finds that physicians consistently underestimate symptom severity in pulmonary arterial hypertension patients, with particularly notable discrepancies in higher WHO functional classes.

  • While both patients and physicians identified dyspnea as the most common symptom (57% and 62% respectively), significant disparities emerged in other symptoms, with 55% of patients reporting fatigue compared to only 34% of physicians noting it.

  • The research, spanning the US, Europe, and Japan, demonstrates that higher WHO functional class correlates with lower quality of life, highlighting the need for improved physician-patient communication.

A new international study has uncovered a significant disconnect between how physicians and patients perceive symptom burden in pulmonary arterial hypertension (PAH), raising concerns about potential impacts on treatment optimization and patient outcomes.
The research, published in Respiratory Medicine, analyzed data from 628 patients across the United States, five European countries, and Japan through the Adelphi Real World PAH Disease-Specific Program, revealing consistent physician underestimation of patient symptoms.

Symptom Perception Disparities

While both patients and healthcare providers identified dyspnea upon exertion as the most prevalent symptom, marked differences emerged in the assessment of other symptoms. Notably, 55% of patients reported experiencing fatigue, while only 34% of physicians documented this symptom in their assessments. The study found "almost no agreement" between physicians and patients regarding symptom severity, with patients consistently reporting more severe symptoms than their physicians estimated.

Quality of Life Impact

The research demonstrated a clear correlation between World Health Organization functional class (WHO-FC) and quality of life, with higher functional classes associated with poorer health-related quality of life (HRQoL) scores. This trend was consistent across all participating countries, though specific scores varied by region.
Dr. R. James White, the study's corresponding author from the University of Rochester Medical Center, emphasized the critical implications of these findings: "It's self-evident that providers cannot deliver optimal treatment strategies nor best outcomes if they don't accurately assess symptom burden in PAH."

Clinical Implications

The disparity in symptom assessment was particularly pronounced in patients with higher WHO functional classes. Researchers suggested several potential factors contributing to this disconnect, including:
  • Limited time during clinical examinations
  • Patient tendency to downplay symptoms when speaking with physicians
  • Variations in symptom reporting methods

Study Limitations and Future Directions

While the research provides valuable insights, the investigators noted that the study population skewed toward patients with lower WHO functional classes and those on monotherapy. Despite these limitations, the findings strongly indicate a systematic underestimation of patient symptoms by physicians, highlighting the need for improved communication and assessment strategies.
The study builds on previous research, including a 2021 UK study that demonstrated the predictive value of disease-specific HRQoL assessments for patient outcomes. The findings underscore the importance of bridging the information gap between patients and physicians to optimize treatment strategies and improve patient care in PAH management.
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Reference News

[1]
People With PAH Report Higher Symptom Burden Than Their Physicians
ajmc.com · Dec 30, 2024

A report in Respiratory Medicine highlights the high disease burden and declining quality of life for PAH patients, noti...

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