What does care for adults with non-tuberculous mycobacteria pulmonary disease (NTM-PD) look like? Results from a UK-wide survey

Abstract

Background Clinical outcomes for NTM-PD are often poor. The NTM Network UK Standards of Care were launched in 2024 to support consistent, high-quality practice including pharmacological and non-pharmacological treatment. We aimed to document NTM-PD management prior to this to identify opportunities to improve care. Methods Centres were invited via the NTM Network UK to complete an online retrospective survey. At each site, anonymised clinical data were recorded from three consecutive adults (>=18) newly diagnosed with NTM-PD from 1 January 2022. Results 48 centres participated (Northern England, n=12; Southern England, n=12; London, n=9; Wales, n=7; Midlands, n=6; Scotland, n=2) They reported having the following resources: physiotherapy for airway clearance (n=42/48, 88%), dietitian and pulmonary rehabilitation (each n=32, 67%), specialist nurse (n=30, 63%), and health psychology (n=9, 19%). Respondents contributed data on 137 patients. 72 (53%) were female and 115 (84%) identified as White-British. 45 (34%) were aged 61-70. 62 (45%) had COPD and 55 (40%) bronchiectasis. Common radiological findings were nodular-bronchiectatic change (n=62, 45%), fibro-cavitary disease (n=40, 29%), and emphysema (n=39, 28%). Mycobacterium avium complex (MAC) was identified in 106 (77%), M. kansasii(n=14, 10%) and M. abscessus (n=9, 7%). Eighty-one (59%) patients were discussed in an MDT. Treatment plans included involvement of specialist nurses (n=91, 66%), physiotherapists (n=52, 38%), dietitians (n=34, 25%), and pulmonary rehabilitation (n=16, 12%). Forty-two (31%) were advised on airway clearance using Active Cycle Breathing, 25 (18%) Positive Expiratory Pressure devices, 17 (12%) mucoactive drugs, and 12 (9%) hypertonic saline. Written resources were provided to 39 (28%) patients, 22 (16%) were directed to patient-focused websites, and 13 (10%) signposted to peer-support networks. During a median follow-up from diagnosis of 21 (IQR 14-29) months, 124 (91%) started antibiotics for NTM-PD. Forty-five (33%) remain on follow-up and using antibiotics, 53 (39%) are not on antibiotics, 26 (19%) were discharged, and 12 (9%) died. Conclusion This UK-wide assessment of NTM-PD management reveals significant variation in available services and care provided. Most patients started specific antimicrobials, though non-medical health care support and patient information provision were limited. We have identified important areas for re-audit against the 2024 Standards.