McDonald Fiona, Coleman Lorraine, Gillett Claire, Harwood Shirley, McCann Sally, Minty Sarah, Sinnett Tanya
NTM Patient Care UK, Royal Free Hampstead NHS Trust, Royal Free Hospital, Pond, London, UK.
J Patient Exp. 2025 Aug 12;12:23743735251367077. doi: 10.1177/23743735251367077. eCollection 2025.
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.
非结核分枝杆菌肺病(NTM-LD)是一种全球发病率不断上升的慢性感染性疾病,主要影响患有支气管扩张和慢性阻塞性肺疾病等原有肺部疾病的个体。尽管有临床指南和新发布的治疗标准,但医疗保健专业人员(HCPs)对NTM-LD的熟悉程度存在差异,导致诊断延迟、护理不一致以及患者预后不佳。基于我们作为NTM-LD患者的自身经历,我们强调了NTM-LD管理中的关键问题,包括诊断效率低下、获得专科护理的机会不一、共情体验参差不齐以及信息提供不足。我们提出了一些建议,希望能优化患者就医过程并改善NTM-LD患者的预后。这些建议包括提高HCP的教育水平、从诊断时起确保多学科团队的参与、增强患者在决策中的参与度以及促进获得支持网络。我们提出的挑战和解决方案具有全球相关性,并突出了清晰沟通和综合护理路径的必要性。在初级和二级护理环境中,以患者为中心的协作方法对于有效管理这种复杂疾病至关重要。