{
  "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.",
  "authors": [
    {
      "affiliations": [
        "UCL Respiratory, Division of Medicine, University College London, London, UK"
      ],
      "name": "N Sulaiman"
    },
    {
      "affiliations": [
        "UCL Respiratory, Division of Medicine, University College London, London, UK",
        "Department of Respiratory Medicine, Royal London Hospital, Barts Health NHS Trust, London, UK"
      ],
      "name": "A Malhotra"
    },
    {
      "affiliations": [
        "Leeds Teaching Hospitals, Leeds, UK"
      ],
      "name": "S Ahmed"
    },
    {
      "affiliations": [
        "Princess Alexandra Hospital, Harlow, UK"
      ],
      "name": "M Anwar"
    },
    {
      "affiliations": [
        "Liverpool University Hospitals NHS Foundation Trust, Liverpool, UK"
      ],
      "name": "S Aston"
    },
    {
      "affiliations": [
        "University Hospital of Wales, Cardiff, UK"
      ],
      "name": "J Ayling-Smith"
    },
    {
      "affiliations": [
        "Addenbrooke’s Hospital, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK"
      ],
      "name": "P Bailey"
    },
    {
      "affiliations": [
        "Lewisham and Greenwich NHS Trust, London, UK"
      ],
      "name": "L Baker"
    },
    {
      "affiliations": [
        "Chelsea and Westminster Hospital NHS Foundation Trust, London, UK"
      ],
      "name": "M Bracchi"
    },
    {
      "affiliations": [
        "St Woolos Hospital, Aneurin Bevan University Health Board, Newport, UK"
      ],
      "name": "R Bunce"
    },
    {
      "affiliations": [
        "Homerton Healthcare NHS Foundation Trust, London, UK"
      ],
      "name": "M Burman"
    },
    {
      "affiliations": [
        "University College London Hospitals NHS Foundation Trust, London, UK"
      ],
      "name": "S Capocci"
    },
    {
      "affiliations": [
        "Glasgow Royal Infirmary, Glasgow, UK"
      ],
      "name": "B Choo-Kang"
    },
    {
      "affiliations": [
        "North Cumbria Integrated Care NHS Foundation Trust, Cumbria, UK"
      ],
      "name": "G Clive"
    },
    {
      "affiliations": [
        "Imperial College Healthcare NHS Trust, Hammersmith and St Mary’s, London, UK"
      ],
      "name": "M Coleman"
    },
    {
      "affiliations": [
        "Darlington Memorial Hospital, Darlington, UK"
      ],
      "name": "S Cowie"
    },
    {
      "affiliations": [
        "East Lancashire Hospitals Trust, Burnley, UK"
      ],
      "name": "A Cowley"
    },
    {
      "affiliations": [
        "Bristol Adult Cystic Fibrosis Centre, Bristol, UK"
      ],
      "name": "S Cowman"
    },
    {
      "affiliations": [
        "Victoria Hospital, NHS Fife, Kirkcaldy, UK"
      ],
      "name": "D Dhasmana"
    },
    {
      "affiliations": [
        "Betsi Cadwaladr, University Health Board Wrexham Maelor Hospital, Wrexham, UK"
      ],
      "name": "C Edwards"
    },
    {
      "affiliations": [
        "Royal Papworth Hospital NHS Foundation Trust, Cambridge, UK"
      ],
      "name": "NP Gbajie"
    },
    {
      "affiliations": [
        "Manchester University NHS Foundation Trust, Manchester, UK"
      ],
      "name": "T Gorsuch"
    },
    {
      "affiliations": [
        "Portsmouth Hospitals University NHS Trust, Portsmouth, UK"
      ],
      "name": "B Green"
    },
    {
      "affiliations": [
        "Calderdale and Huddersfield NHS Foundation Trust, Calderdale Royal Hospital, Halifax, UK"
      ],
      "name": "A Hardy"
    },
    {
      "affiliations": [
        "Kingston Hospital NHS Foundation Trust, London, UK"
      ],
      "name": "E Holden"
    },
    {
      "affiliations": [
        "Torbay And South Devon NHS Foundation Trust, Torquay, UK"
      ],
      "name": "B Hulance"
    },
    {
      "affiliations": [
        "Royal Sussex County Hospital, Brighton, UK"
      ],
      "name": "K Hurt"
    },
    {
      "affiliations": [
        "University Hospital Llandough, Penarth, UK"
      ],
      "name": "N Johl"
    },
    {
      "affiliations": [
        "Hywel Dda University Health Board, Carmarthen, UK"
      ],
      "name": "K Jones"
    },
    {
      "affiliations": [
        "Department of Respiratory Medicine, Royal London Hospital, Barts Health NHS Trust, London, UK"
      ],
      "name": "H Kunst"
    },
    {
      "affiliations": [
        "Royal Derby Hospital, Derby, UK"
      ],
      "name": "H Lawrence"
    },
    {
      "affiliations": [
        "Royal Infirmary of Edinburgh, Edinburgh, UK"
      ],
      "name": "A Lithgow"
    },
    {
      "affiliations": [
        "University Hospitals of North Midlands, Royal Stoke University Hospital, Staffordshire, Stoke-on-Trent, UK"
      ],
      "name": "V Lloyd"
    },
    {
      "affiliations": [
        "Liverpool University Hospitals NHS Foundation Trust, Liverpool, UK"
      ],
      "name": "A Malachira"
    },
    {
      "affiliations": [
        "North Bristol NHS Trust, Southmead Hospital, Bristol, UK"
      ],
      "name": "L Martin"
    },
    {
      "affiliations": [
        "Department of Respiratory Medicine, Royal London Hospital, Barts Health NHS Trust, London, UK"
      ],
      "name": "R Merriman"
    },
    {
      "affiliations": [
        "University Hospitals Dorset, Dorset, UK"
      ],
      "name": "D Morgan"
    },
    {
      "affiliations": [
        "Morriston Hospital Swansea Bay University Health Board, Swansea, UK"
      ],
      "name": "A Mughal"
    },
    {
      "affiliations": [
        "County Durham and Darlington NHS Foundation Trust, Darlington, UK"
      ],
      "name": "S Murphy"
    },
    {
      "affiliations": [
        "Cwm Taf Morgannwg UHB, Abercynon, UK"
      ],
      "name": "N Murray"
    },
    {
      "affiliations": [
        "Royal Cornwall Hospitals NHS Trust, Cornwall, UK"
      ],
      "name": "J Myers"
    },
    {
      "affiliations": [
        "Worthing Hospital, Sussex, UK"
      ],
      "name": "NK Numbere"
    },
    {
      "affiliations": [
        "London North West University Healthcare NHS Trust, London, UK"
      ],
      "name": "P Papineni"
    },
    {
      "affiliations": [
        "Sheffield Thoracic Institute, Northern General Hospital, Sheffield, UK"
      ],
      "name": "O Pirzada"
    },
    {
      "affiliations": [
        "Bradford Royal Infirmary, Bradford Teaching Hospitals NHS Foundation Trust, Bradford, UK"
      ],
      "name": "S Rashid"
    },
    {
      "affiliations": [
        "University Hospital Southampton, Southampton, UK"
      ],
      "name": "A Rosser"
    },
    {
      "affiliations": [
        "University Hospitals Coventry and Warwickshire NHS Trust, Coventry, UK"
      ],
      "name": "N Sabtu"
    },
    {
      "affiliations": [
        "Buckinghamshire Healthcare NHS Trust, Buckinghamshire, UK"
      ],
      "name": "M Shahidi"
    },
    {
      "affiliations": [
        "Newcastle upon Tyne Hospitals NHS Foundation Trust, Royal Victoria Infirmary, Newcastle Upon Tyne, UK"
      ],
      "name": "S Smith"
    },
    {
      "affiliations": [
        "St Richard, Chichester, UK"
      ],
      "name": "P Tate"
    },
    {
      "affiliations": [
        "Liverpool Heart and Chest Hospital, Liverpool, UK"
      ],
      "name": "D Wat"
    },
    {
      "affiliations": [
        "Gloucestershire Hospitals NHS Foundation Trust, Gloucester, UK"
      ],
      "name": "A White"
    },
    {
      "affiliations": [
        "NTM Network UK, London, UK"
      ],
      "name": "R Breen"
    },
    {
      "affiliations": [
        "NTM Network UK, London, UK"
      ],
      "name": "E Rattigan"
    },
    {
      "affiliations": [
        "UCL Respiratory, Division of Medicine, University College London, London, UK",
        "Department of Respiratory Medicine, The Royal Free London NHS Foundation Trust, London, UK"
      ],
      "name": "J Hurst"
    },
    {
      "affiliations": [
        "UCL Respiratory, Division of Medicine, University College London, London, UK",
        "Department of Respiratory Medicine, The Royal Free London NHS Foundation Trust, London, UK"
      ],
      "name": "J Brown"
    },
    {
      "affiliations": [
        "NTM Network UK, London, UK",
        "Department of Respiratory Medicine, The Royal Free London NHS Foundation Trust, London, UK",
        "UCL-TB and UCL Respiratory, University College London, London, UK"
      ],
      "name": "M Lipman"
    }
  ],
  "title": "P188 What does care for adults with non-tuberculous mycobacteria pulmonary disease (NTM-PD) look like? Results from a UK-wide survey",
  "uid": "2caf1f7c-71ea-594b-8da1-b70dbeb28847"
}