Barriers to Early Diagnosis

Diagnosis of pulmonary hypertension often takes years, during which patients are commonly misdiagnosed one or more times. In the end, a majority of patients have reached the advanced stages of the disease by the time they are finally diagnosed by right heart catheterization.

What can cause a delay in the diagnosis of PH?

A small delay in diagnosis has a dramatic impact on prognosis.

Preconception: Tendency to diagnose more common diseases and conditions

  • When patients tell their doctors about nonspecific symptoms such as shortness of breath, a more common disorder such as asthma may be suspected.

Comorbidities: Development of PH may be masked due to other coexisting disease(s) with similar symptoms

  • A patient may have a poor walk distance attributed to an orthopedic impairment, thus masking a cardiopulmonary limitation.
  • With older age, and perhaps a lower activity level, a loss of exercise tolerance may not be identified until more noticeable signs of right heart failure occur.
  • Common respiratory disorders such as obstructive lung disease and sleep apnea may lead to misdiagnosis.

Progression of Disease: Milder hemodynamic impairment in patients may make PH more difficult to recognize

  • Without overt signs of right ventricular failure, a diagnostic catheterization is less likely to occur promptly at symptom onset, denying the opportunity for earlier initiation of therapy.

Age Disparities: Patients younger than 36 years have the highest likelihood of delayed recognition of PAH

  • In younger patients, breathlessness is less likely to raise concern for cardiovascular disease. A more common disorder, such as asthma, may be suspected.
  • Younger patients with a higher level of activity are more likely to notice symptoms earlier in the course of the disease when the PH is milder.
  • Young patients are one of the largest groups of uninsured Americans.

Socioeconomic Disparities: Uneven access to healthcare in the United States

Source: Delay in Recognition of Pulmonary Arterial Hypertension: Factors Identified From the REVEAL Registry (PDF), Lynette M. Brown, MD, PhD, FCCP, et al (CHEST, 2011)

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PH by the Numbers

  • The average time between PH symptom onset and diagnosis is 2.8 years.
  • Many patients will see 3 or more different physicians over a 3 year period before they are properly diagnosed with PAH.
  • 1 in 5 patients in the REVEAL Registry who were diagnosed with PAH reported symptoms for more than 2 years before their disease was recognized.
  • Women are 4 times more likely than men to be diagnosed with IPAH, and they are just as likely to have a delay in diagnosis.
Sources: Delay in Recognition of Pulmonary Arterial Hypertension: Factors Identified From the REVEAL Registry (PDF), Lynette M. Brown, MD, PhD, FCCP, et al (CHEST, 2011); PHA International White Paper, Pulmonary Arterial Hypertension: Recommendations for Improving Patient Outcomes (2011)

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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