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Optimizing the Journey for Patients With Nontuberculous Mycobacterial (NTM) Lung Disease in the United Kingdom
Fiona McDonald1, Lorraine Coleman1, Claire Gillett1
1NTM Patient Care UK, Royal Free Hampstead NHS Trust, Royal Free Hospital, Pond, London, UK.
Abstract:
Nontuberculous mycobacterial lung disease (NTM-LD) is a chronic infection with increasing global incidence, which primarily affects individuals with preexisting lung conditions such as bronchiectasis and chronic obstructive pulmonary disease. Despite the availability of clinical guidelines and newly published Standards of Care, variability in healthcare professionals' (HCPs) familiarity with NTM-LD results in delayed diagnoses, inconsistent care, and suboptimal patient outcomes. Based on our own experiences as NTM-LD patients, we highlight key issues in the management of NTM-LD, including diagnostic inefficiencies, variable access to specialized care, mixed experience of empathy, and insufficient information provision. We provide recommendations that we hope will optimize the patient journey and improve outcomes for individuals with NTM-LD. These include improving HCP education, ensuring the involvement of a multidisciplinary team from the point of diagnosis, enhancing patient participation in decision-making, and promoting access to support networks. The challenges and solutions we propose are globally relevant and highlight the need for clear communication and integrated care pathways. A collaborative, patient-centered approach is crucial to effectively managing this complex disease in both primary and secondary care settings.
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