Rationale behind the development of Standards of Care for people living with NTM disease
We at NTM Network UK have long recognised the presence of significant variations in care for people in the UK with NTM disease. This was highlighted by two recent Network studies, which identified a number of issues associated with this variation, including a lack of standardised healthcare pathways and limited patient-centred approaches to management.(1,2)
 
There is an urgent need for consistent, standardised, high-quality care to be provided to people with NTM disease in the UK, irrespective of where they are managed. Whilst we already have excellent NTM guidelines describing generally recommended courses of action in the management of NTM pulmonary disease (3,4), no guidelines for extrapulmonary NTM disease or Standards of Care for either condition currently exist. A Standard of Care is different to a guideline and can be described as follows:

• A diagnostic and treatment process that a clinician should follow for a certain type of patient, illness, or clinical circumstance (5)

• The level at which the average, prudent provider in a given community would practice (5)

To address this unmet need, NTM Network UK began work on the first Standards of Care for people living with NTM disease in the UK in early 2022 in partnership with healthcare professionals, people living with NTM, and professional associations.
 
The Standards will cover six key themes that address the most important issues for the care of people living with NTM disease. They are derived from the best available evidence, and focus on aspects of care that are particularly relevant to the delivery of equitable, high- quality services.

They aim to provide a written guide to the minimum level of care that people living with NTM disease should expect to receive in the NHS. The Standards also contain measurable indicators of good practice that allow services to benchmark themselves and so identify areas of strength and also need. Ultimately, it is intended that implementation of these. Standards will help people living with NTM disease to achieve their best possible health outcomes.

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1. Malhotra AM, Bryant S, Kunst H, Haworth CS, Lipman M; NTM Network UK. Management of nontuberculous. Mycobacteria-pulmonary disease: Results from the first UK survey of clinical practice. J Infect. 2023;87:64–67

2. Morrison L et al, on behalf of NTM Network UK. What guidelines say and what actually happens. A survey of UK physiotherapy practice in the management of non tuberculous mycobacterial pulmonary disease. Abstract presented at the British Thoracic Society Winter Meeting; 23rd to 25th November 2022; London, UK.

3. Haworth CS, Banks J, Capstick T, et al. British Thoracic Society guidelines for the management of non-tuberculous mycobacterial pulmonary disease (NTM-PD).Thorax. 2017;72:ii1-ii64.

4. Daley CL, Iaccarino JM, Lange C, et al. Treatment of nontuberculous mycobacterial pulmonary disease: an officialATS/ERS/ESCMID/IDSA clinical practice guideline. Eur Respir J. 2020;56:2000535.

5. Medical definition of standard of care. Available from: https://www.medicinenet.com/standard_of_care/definition.htm.