China's first IPF handbook released

The IPF Knowledge Popularization Handbook, the first educational publication in China about the rare lung disease called idiopathic pulmonary fibrosis, was published during an online meeting on July 9.

The compilation of the handbook was initiated by the domestic patient community Deep Breath For Love IPF Care Center. Several leading experts in interstitial lung diseases in the country participated in its revision while German pharmaceutical company Boehringer Ingelheim provided support.

IPF is a chronic fibrotic interstitial lung disease. Though patients might have insignificant symptoms in the early stage, the condition can eventually lead to respiratory failure and even death. Fewer than 30 percent of IPF patients survive for five years after being diagnosed.

The reasons behind the disease, which usually afflicts people over 50 years old, is unclear.

There are an estimated 3 million IPF patients around the world, while the statistics regarding Chinese patients remains unknown. The disease was included in the first rare disease catalogue issued by five ministries and commissions in China in 2018.

The handbook contains basic knowledge and information regarding daily disease management, regular checkup, complications, emergency situation handling, psychological health, research progress, and lung transplant.

"Such a handbook will help patients obtain early diagnosis, more timely and effective treatment, and thus slow down disease progression and reduce the possibility of acute deterioration. This can help improve their long-term disease management and prognosis," said Dai Huaping, a senior doctor of respiratory diseases and critical medicine at the China-Japan Friendship Hospital in Beijing.

The handbook can also increase the understanding of the disease among patients and the public, which could lead to earlier discovery and treatment, said Xu Zuojun, a senior physician of respiratory diseases at Peking Union Medical College Hospital.

Huang Rufang, founder of the Chinese Organization for Rare Disorders, said that the organization will continue to help more patients with rare diseases by working with multiple parties to promote patient education, increase disease diagnosis and treatment rates, and improve treatment affordability.