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S126 Introducing and evaluating the UK’s first medicine-focussed patient information resources for non-tuberculous mycobacterial (NTM) disease: what do we find?

thoraxjnl · 2025-11-02 · canonical JSON source

10 visible annotations · policy: published · automated confidence ≥ 75.00%

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Background Non-tuberculous mycobacterial (NTM) disease is rare, and treatment is prolonged, often requiring complex drug regimens. The NTM Network UK aims to improve the quality of care for NTM patients through collaborative work across multidisciplinary healthcare professionals (HCPs). Recognising the lack of relevant treatment-support materials, a work stream was established to create two resources; Treatment of NTM Tips and Information andIndividual Antibiotic Medicine Information Leaflets, published August 2023 via NTM Patient Care UK and NTM Network UK.1 Our aim was to evaluate the access and use of these resources by patients and HCPs.Methods We analysed download data from the NTM Patient Care UK website and reviewed printed orders requested between March 2024 and March 2025. During May 2025, NTM Network UK and NTM Patient Care UK members were invited to participate in anonymised feedback questionnaires via Microsoft Forms.Results There was significant engagement with the resources; 2,319 views online and 125 printed copies requested by HCPs. Survey responses were received from 23 patients and 45 HCPs (doctors, nurses, pharmacists, dietitians and physiotherapists). All patients were currently/previously prescribed NTM treatment or actively discussing treatment options. Both HCP and patient groups found the information provided in the resources fulfilled their purpose, in particular the sections on managing medicines and side effects (table 1). 44/45 HCPs would recommend the resources to patients. Ease of access to the resources were reported by an average of 65% and 59% of HCPs and patients respectively. Identified barriers included difficulties in accessing online and clinic time constraints. The majority (65%) of patients independently identified the resources through the website.1 Only 5 patients were directed by their HCPs. HCPs preferred printed copies 42% (19/45) vs 7% (2/23) of patients.Abstract S126 Table 1Breakdown of responses from HCPs and patients Survey Question Options HCPs (45 responses) Patients (23 responses) What do you find useful about the Treatment of NTM Tips and Information Booklet? (multiple responses allowed) Easy to access 31 (68%) 14 (61%) General information provided about treatments 38 (84%) 17 (74%) Top tips about managing NTM medicines 34 (76%) 14 (61%) Top tips about managing the side effects 34 (76%) 16 (70%) Further information inc. lifestyle, travel & costs 14 (31%) 6 (26%) What do you find useful about the Individual Antibiotic Medicine Information Leaflets? (multiple responses allowed) Easy to access 28 (62%) 13 (57%) How to take the antibiotics 33 (73%) 9 (39%) What patients need to look out for 32 (71%) 14 (61%) Side effects section 38 (84%) 17 (74%) Expected monitoring section 27 (60%) 11 (48%) Conclusion These resources have had considerable use, with the feedback received overwhelmingly positive. They support the national NTM Standards of Care, and we plan to increase their uptake amongst patients and HCPs, by improving their visibility and ease of access.Reference NTM Patient Care UK. Coping with the medicines. NTM Patient Care UK. 2023. https://www.ntmpatientcare.uk/coping-with-the-medicines