Background

Nontuberculous mycobacterial lung disease (NTM-LD) is a rare but growing health concern, particularly affecting vulnerable patients with chronic lung conditions. Learning from patients about their disease experience can inform decision-making and improve care.

Aims and objectives

The survey aimed to understand patients? needs, identify gaps in patient care, and gain insights into how NTM-LD impacts patients? daily life.

Methods

Patients with self-declared active NTM-LD (recruited via communities, online ads/social media and flyers) from 8 European countries were recruited. The survey consisted of an online questionnaire, supported by semi-structured interviews providing qualitative insights (both in local language). This is the sub-analysis of the burden of disease survey data. 

Results

543 NTM-LD patients met inclusion criteria of which 82% (n=443) were >50 years of age, 73% (n=195) were female and 68% (n=369) were currently under treatment. 23 patients participated in an interview.

Daily and social life were highly restricted for 49% (n=139) and 43% (n=120) of patients, respectively. Patients actively working expressed a negative impact of NTM-LD on their work-life (76%, n=115). The majority of patients (75%, n=203) stated a negative emotional impact. An increase in feeling depressed or anxious was most prominent (82%, n=196). In contrast, 38% (n=109) of patients used support services, of which only 29% (n=32) used psychological support.

Conclusions

NTM-LD substantially impairs patients? lives and is associated with a high burden of disease. Special attention should be paid to lowering impact of NTM-LD by improving care, including access to support services.