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The following is a summary of “Insights from the European Nontuberculous mycobacterial Pulmonary Disease Patient Disease Experience (ENPADE) survey– exploring disease burden and impact,” published in the February 2025 issue of the BMC Pulmonary Medicine by Shteinberg et al.

Nontuberculous mycobacterial pulmonary disease (NTM-PD) presents significant diagnostic and therapeutic challenges, particularly among individuals with underlying lung conditions or immunodeficiencies. This disease can severely impair pulmonary function, diminish quality of life, and contribute to substantial healthcare expenditures and increased mortality. Despite its clinical significance, there is a limited understanding of the disease burden and gaps in care from the patient’s perspective. The European NTM-PD Patient Disease Experience (ENPADE) survey was designed to provide comprehensive insights into these aspects by evaluating patient experiences related to diagnosis, treatment, and overall disease management.

To achieve this, a mixed-methods approach was employed, incorporating both quantitative and qualitative data collection. Between July 2021 and February 2022, an online questionnaire was disseminated across eight European countries to gather quantitative insights, while in-depth semi-structured interviews were conducted with a subset of patients to explore their perspectives in greater detail. Quantitative data were analyzed using descriptive statistics, whereas qualitative responses were categorized according to the survey themes to identify recurring concerns and experiences.

A total of 543 patients participated in the survey, and 23 were interviewed. Analysis of patient responses revealed a moderate level of satisfaction with medical care before and after diagnosis, with only 32% of respondents reporting high satisfaction, while 25% expressed significant dissatisfaction. Dissatisfaction was most commonly linked to delays in referral to specialists, limited access to expert care, and inadequate information about the disease and its management. Additionally, NTM-PD was found to have a profound impact on patients’ daily lives, with 49% reporting substantial limitations in routine activities, 31% experiencing workplace restrictions, and 43% facing difficulties in social engagements. These challenges frequently contributed to emotional distress, with 82% of patients reporting increased feelings of depression or anxiety. Insights from patient interviews reinforced the need for improved disease education, more timely and accurate diagnosis, and enhanced communication between healthcare providers and patients to foster a more supportive and informed treatment experience.

In conclusion, findings from the ENPADE survey highlight significant dissatisfaction among patients with NTM-PD regarding healthcare access and disease management, as well as the profound impact of the disease on daily functioning and emotional well-being. These results underscore the urgent need for standardized care protocols, improved patient education, and stronger physician-patient relationships to enhance overall disease management and quality of life for individuals with NTM-PD.

Source: bmcpulmmed.biomedcentral.com/articles/10.1186/s12890-025-03553-9