This website is part of the ECDC (European Centre for Disease Prevention and Control) network

New ECDC/WHO Euro report: One in five TB patients has extrapulmonary tuberculosis

19 Mar 2013

Every day, around 200 people fall sick with tuberculosis (TB) across the EU/EEA, signalling that there is no room for complacency when it comes to TB prevention and control even in times of financial austerity. To mark World TB Day on the 24 March, ECDC and the WHO Regional Office for Europe release new surveillance data today.

The data show that the EU/EEA countries reported over 72 000 cases of TB in 2011, which is a 4% decrease compared to 2010. The average notification rate - 14.2 per 100 000 population - also represents a decline of pulmonary TB notifications. Notification rates vary significantly across Europe, from 2.8 in Iceland to 89.7 in Romania.

ECDC contributes to TB control by raising awareness and supporting  EU countries, as director Marc Sprenger points out: “Our primary aim is to further reduce TB transmission by timely diagnosis and adequate treatment of pulmonary TB. This is essential for TB elimination. But we should not forget about the patients with extrapulmonary TB: this group is often neglected in TB control strategies. In 2011, 22% of all notified patients in the EU/EEA had extrapulmonary TB, which can affect any organ of the body making the diagnosis particularly difficult for both physicians and patients”.

Extrapulmonary TB: a challenging diagnosis

A case with TB outside the lungs is considered an extrapulmonary TB case. Symptoms may be diffuse and mimic other pathologies, delaying the diagnosis or making it particularly difficult. In 2011, globally 6.2 million TB cases were notified, 0.8 million with extrapulmonary TB. In the European Union, one in five tuberculosis patients has extrapulmonary TB and unlike pulmonary TB, this form of the disease does not show a downward trend. Extrapulmonary TB is rarely infectious but contributes significantly to TB-related morbidity and can cause complications, lifelong sequelae and disabilities.

For World TB Day 2013, ECDC is launching a video documentary that focuses on extrapulmonary tuberculosis (TB). Two patient stories illustrate how difficult the diagnosis of extrapulmonary TB can be before proper treatment and care can start:

Winnie, 39 years old, living in Stockholm (Sweden)

After the first symptoms of abdominal pain started, Winnie visited her family doctor. With increasing swelling of the abdomen, the 39 year-old mother of two was later referred to Stockholm’s Karolinska Hospital gynaecological clinic. The suspected diagnosis of ovarian cancer made Winnie fear for her life and the future of her family.
Seven months after the first symptoms, Winnie was finally told she had extrapulmonary tuberculosis. Treatment started almost immediately: it was just the beginning of Winnie’s battle against the disease.

Italian patient, 54 years old, living in Brescia (Italy)

Nothing indicated that it could be tuberculosis causing the painful swelling in the chest of one Italian patient. For months, her family doctor and several speciality doctors struggled to find a diagnosis that matched her elusive symptoms.
Only after a full clinical investigation did the 54 year-old housewife learn that she had tuberculosis, not in her lungs, but in her chest. For her, the word “tuberculosis” still carries stigma and discrimination. That’s why she decided to share her story but not her identity.

TB treatment
Adequate treatment is essential to prevent the development of the drug-resistant forms of the disease, the multidrug-resistant TB (MDR TB) and the extensively drug-resistant TB (XDR TB). In 2011, cases of MDR TB have decreased but continue to be prevalent especially in the Baltic countries.

The ECDC/WHO surveillance report highlights that for the patients with known treatment outcome, only 74% were treated successfully. For 17%, treatment outcome is unknown. This is especially serious given that one untreated TB or MDR TB patient can infect 10-15 other individuals per year.


Press Release Adequate treatment essential to stop TB across Europe - ECDC/WHO new report”


Extrapulmonary Tuberculosis: a challenging diagnosis - video documentary

ECDC/WHO TB Surveillance and Monitoring Report 2013
ECDC/WHO TB Surveillance and Monitoring Report 2013 Slide presentation - main findings

Join the #TBchat
10.00–11.00 UTC/GMT (11:00–12:00 CET, Stockholm time). Use #TBchat to follow the conversation. Follow us on @ECDC_EU and @ECDC_TB

Read more


© European Centre for Disease Prevention and Control (ECDC) 2005 - 2017