What is important for people with nontuberculous mycobacterial disease? An EMBARC-ELF patient survey

Shteinberg, Michal; Boyd, Jeanette; Aliberti, Stefano; Polverino, Eva; Harris, Bridget; Berg, Tove; Posthumus, Annette; Ruddy, T. Michael; Goeminne, Pieter; Lloyd, Ernie; Altenburg, Josje; Crossley, Barbara; Blasi, Francesco; Chalmers, James D.

doi:10.1183/23120541.00807-2020

Cited by 10 publications

(7 citation statements)

References 17 publications

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“…Indeed, there have been calls for increased reporting of patient-reported experiences from NTM centres to inform cost-benefit assessments [129]. A survey of patients with NTM-PD revealed that their top concerns included fatigue, cough, exacerbations and treatment side-effects, and they highlighted the need for increased awareness of NTM-PD management among primary care clinicians [130]. However, there are currently no clinically validated and widely used PROMs for patients with NTM-PD.…”

Section: Discussionmentioning

confidence: 99%

Management ofMycobacterium aviumcomplex andMycobacterium abscessuspulmonary disease: therapeutic advances and emerging treatments

et al. 2022

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Nontuberculous mycobacterial pulmonary disease (NTM-PD) remains a challenging condition to diagnose and treat effectively. Treatment of NTM-PD is prolonged, frequently associated with adverse effects and has variable success. In this review, we consider the factors influencing clinicians when treating NTM-PD and discuss outcomes from key studies on the pharmacological management of Mycobacterium avium complex pulmonary disease and M. abscessus pulmonary disease. We highlight issues relating to treatment-related toxicity and provide an overview of repurposed and emerging therapies for NTM-PD.

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Section: Discussionmentioning

confidence: 99%

Management ofMycobacterium aviumcomplex andMycobacterium abscessuspulmonary disease: therapeutic advances and emerging treatments

et al. 2022

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“…A better understanding of the microbiology, pathogenesis, and epidemiology is needed to optimise patient care. A recent survey by EMBARC of patient perspectives indicated that development of new, effective drugs with improved tolerability was an imperative [ 106 ]. Before recent guideline updates [ 22 ], treatment outcomes for NTM-PD were seen to be suboptimal [ 48 ], and for patients who failed first-line treatment, options were limited [ 107 ].…”

Section: Future Perspectivesmentioning

confidence: 99%

Meeting the challenges of NTM-PD from the perspective of the organism and the disease process: innovations in drug development and delivery

Laan¹,

Snabilié²,

Obradović³

2022

Respir Res

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Non-tuberculous mycobacterial pulmonary disease (NTM-PD) poses a substantial patient, healthcare, and economic burden. Managing NTM-PD remains challenging, and factors contributing to this include morphological, species, and patient characteristics as well as the treatment itself. This narrative review focusses on the challenges of NTM-PD from the perspective of the organism and the disease process. Morphological characteristics of non-tuberculous mycobacteria (NTM), antimicrobial resistance mechanisms, and an ability to evade host defences reduce NTM susceptibility to many antibiotics. Resistance to antibiotics, particularly macrolides, is of concern, and is associated with high mortality rates in patients with NTM-PD. New therapies are desperately needed to overcome these hurdles and improve treatment outcomes in NTM-PD. Amikacin liposome inhalation suspension (ALIS) is the first therapy specifically developed to treat refractory NTM-PD caused by Mycobacterium avium complex (MAC) and is approved in the US, EU and Japan. It provides targeted delivery to the lung and effective penetration of macrophages and biofilms and has demonstrated efficacy in treating refractory MAC pulmonary disease (MAC-PD) in the Phase III CONVERT study. Several other therapies are currently being developed including vaccination, bacteriophage therapy, and optimising host defences. Newly developed antibiotics have shown potential activity against NTM-PD and include benzimidazole, delamanid, and pretomanid. Antibiotics commonly used to treat other infections have also been repurposed for NTM-PD, including clofazimine and bedaquiline. Data from larger-scale studies are needed to determine the potential of many of these therapies for treating NTM-PD.

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“…It is therefore vital that treatment decisions are made jointly between the healthcare team and the patient, considering the patient's wishes and expectations for treatment as well as the risks and benefits [ 9 , 12 ]. In many cases, antibiotic treatment may not be appropriate, and management should instead focus on interventions such as chest physiotherapy and promoting a healthy body weight and good nutrition [ 4 , 12 ].…”

Section: Case Studiesmentioning

confidence: 99%

“…A typical treatment course involves use of several antibiotics for 1–2 years, which can be associated with significant adverse effects and drug-drug interactions [ 2 , 3 , 8 ]. Furthermore, treatment is often unsuccessful in curing NTM-PD [ 9 ]. Therefore, a positive diagnosis of NTM-PD should not automatically lead to antibiotic treatment, particularly in patients with mild symptoms [ 1 , 3 , 4 , 6 ].…”

Section: Introductionmentioning

confidence: 99%

Case studies to illustrate good practice in the management of non-tuberculous mycobacterial pulmonary disease

Tiberi

Lipman

Floto

2022

Respiratory Medicine Case Reports

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What is important for people with nontuberculous mycobacterial disease? An EMBARC-ELF patient survey

Cited by 10 publications

References 17 publications

Management ofMycobacterium aviumcomplex andMycobacterium abscessuspulmonary disease: therapeutic advances and emerging treatments

Management ofMycobacterium aviumcomplex andMycobacterium abscessuspulmonary disease: therapeutic advances and emerging treatments

Meeting the challenges of NTM-PD from the perspective of the organism and the disease process: innovations in drug development and delivery

Case studies to illustrate good practice in the management of non-tuberculous mycobacterial pulmonary disease

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