P188 What does care for adults with non-tuberculous mycobacteria pulmonary disease (NTM-PD) look like? Results from a UK-wide survey
<h3>Background</h3> 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. <h3>Methods</h3> 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. <h3>Results</h3> 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%). <i>Mycobacterium avium complex</i> (MAC) was identified in 106 (77%), <i>M. kansasii</i>(n=14, 10%) and <i>M. abscessus</i> (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. <h3>Conclusion</h3> 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.
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