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Non tuberculous mycobacteria pulmonary disease: patients and clinicians working together to improve the evidence base for care

Lipman, M; Kunst, H; Loebinger, MR; Milburn, HJ; King, M; (2021) Non tuberculous mycobacteria pulmonary disease: patients and clinicians working together to improve the evidence base for care. International Journal of Infectious Diseases 10.1016/j.ijid.2021.03.064. (In press). Green open access

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Abstract

Non-tuberculous mycobacterial pulmonary disease is on the rise globally. It is often missed, and causes significant morbidity and even mortality. Here, members of a clinical research network and a patient support group discuss some of the current key issues in NTM management. In addition to the need for research into epidemiology, immunology and treatment, we recommend greater use of patient and clinician networks to: (i) educate primary and secondary care clinicians to develop a high index of suspicion when investigating and treating at risk populations. (ii) promote a multidisciplinary team. (iii) promote shared patient-clinician decision making throughout care. (iv) incorporate use of patient self-report measures to assess progress and outcomes. (v) increase education of patients on their illness and its management. (vi) recruit patients into research projects and registries to improve the clinical evidence base. (vii) increase co-production of research with key stakeholders such as patients and their families, using expert patients and patient groups. (viii) understand more about the psychological, social and economic consequences of the disease.

Type: Article
Title: Non tuberculous mycobacteria pulmonary disease: patients and clinicians working together to improve the evidence base for care
Location: Canada
Open access status: An open access version is available from UCL Discovery
DOI: 10.1016/j.ijid.2021.03.064
Publisher version: https://doi.org/10.1016/j.ijid.2021.03.064
Language: English
Additional information: © 2021 The Author(s). Published by Elsevier Ltd on behalf of International Society for Infectious Diseases under a Creative Commons license (https://creativecommons.org/licenses/by/4.0/).
Keywords: Multidisciplinary, Mycobacteria, Outcome, Patient, Research, Support group, Treatment
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine > Respiratory Medicine
URI: https://discovery.ucl.ac.uk/id/eprint/10125716
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