More than half of pulmonary arterial hypertension sufferers did not receive standard initial treatments and did not obey subsequent consultations regularly, according to China's first white book on such patients' living situations.

Insufficient knowledge about the disease, therapy inaccessibility and high medical bills were the main reasons for non-compliance given by patients, according to the white book, which was based on surveys of around 500 PAH sufferers.

The white book released ahead of Wednesday, the world's inaugural Pulmonary Arterial Hypertension Day, reminding medical circles and the public standardized management of these patients throughout the disease phases requires improvement.

The report was guided by the national cardiovascular disease expert committee, initiated by the China Primary Health Care Foundation and supported by Xi'an Janssen Pharmaceuticals Ltd, and showed PAH patients spent an average of 2.2 years before diagnosis owing to insufficient knowledge about the disease and diagnosis capability. It took them an average of 2.6 years to get initial treatment after being diagnosed.

Experts pointed out PAH is a progressive lethal disease. Delayed treatment will often affect the patients' long-term prognosis.

In China, the current five-year survival rate of PAH patients not receiving targeted drugs is only 34 percent, and that of those receiving targeted therapies is 96 percent.

Liu Zhihong, a member of the national cardiovascular disease expert committee, said some specialty hospitals should function as role models and promote the improvement of the diagnosis and treatment levels of more medical institutions.

"We call for more participants from various fields of society to collaborate in the strengthening of education to both medical workers and patients, improve treatment compliance and relieve sufferers' burdens to ultimately benefit the patients," said Liu, also a chief physician at the cardiology department of Fuwai Cardiovascular Disease Hospital Affiliated with the Chinese Academy of Medical Sciences in Beijing.