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Living with non-tuberculous mycobacteria pulmonary disease (NTM-PD) presents many challenges, yet until now, little data has been available to truly understand the patient experience. The European NTM Pulmonary Disease Patient Disease Experience Survey (ENPADE) was designed to bridge this gap by gathering firsthand insights from those living with NTM-PD across Europe.
We are pleased to announce that the ENPADE survey findings have now been published in BMC Pulmonary Medicine, marking a significant step toward amplifying patient voices in healthcare decision-making. A summary report is also available at www.ntmpatientsurvey.eu.
Understanding the Impact of NTM-PD
NTM-PD is a serious condition that can have a profound impact on daily life, but due to its rarity, patient perspectives are often overlooked. The ENPADE survey, conducted across eight European countries with input from 543 NTM-PD patients, provides valuable insights into:
- Daily life and disease burden – How NTM-PD affects patients’ ability to engage in everyday activities.
- Unmet medical needs – The challenges patients face in managing their condition and accessing effective treatments.
- Healthcare barriers – Gaps in care, difficulties in obtaining a diagnosis, and obstacles in accessing specialized treatment.
Why This Matters
At admedicum, we believe that healthcare advances must be informed by those who experience the disease firsthand. The ENPADE survey highlights the urgent need to integrate patient perspectives into research, policy, and clinical care to ensure that NTM-PD patients receive the support they need.
We extend our heartfelt gratitude to all the patients who took part in this study, sharing their time and personal experiences to help drive meaningful change.
This project was sponsored by Insmed Incorporated, whose support has been instrumental in bringing these patient insights to light.
