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

Abstract

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. 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.