title: Patient-Centered Research Priorities for Pulmonary Nontuberculous Mycobacteria (NTM) Infection. An NTM Research Consortium Workshop Report.
abstract: Nontuberculous mycobacteria (NTM) cause an increasingly important chronic and debilitating lung disease in older adults. Diagnosis is often delayed, although awareness among clinicians and patients is increasing. When necessary, treatment often lasts 18-24 months and consists of three or four antibiotics that can have serious side effects. Relapses are common and commonly require resumption of prolonged therapy. Given the need for improved diagnostic techniques and clinical trials to identify new therapies or to improve existing therapies, a group of North American clinicians and researchers formed the NTM Research Consortium (NTMRC) in 2014. The NTMRC recognized the importance of including the patient voice in determining research priorities for NTM. In November 2015, patients, caregivers, patient advocates, clinical experts, and researchers gathered for a 1-day meeting in Portland, Oregon funded by the Patient-Centered Outcomes Research Institute. The meeting goal was to define patient-centered research priorities for NTM lung infections. Patients expressed frustration with the number of people who have endured years of missed diagnoses or inadequate treatment of NTM. Participants identified as top research priorities the prevention of NTM infection; approval of more effective treatments with fewer side effects and easier administration; understanding the best chest physiotherapy methods; validating and using tools to measure quality of life; and developing a disease-specific activity and severity assessment tool. Workshop participants agreed that two complementary objectives are critical to ensure the best achievable outcomes for patients: (1) additional clinician education to improve screening and diagnosis of NTM infections; and (2) development of a geographically distributed network of experts in NTM disease to offer consultation or direct therapy after a diagnosis is made.
authors.affiliation: 1 School of Public Health, Oregon Health & Science University-Portland State University, Portland, Oregon.
authors.forename: Emily
authors.initials: E
authors.lastname: Henkle
authors.affiliation: 2 Pulmonary Disease and Critical Care Medicine, Mayo Clinic, Rochester, Minnesota.
authors.forename: Timothy
authors.initials: T
authors.lastname: Aksamit
authors.affiliation: 3 Pulmonary Critical Care Medicine, Oregon Health & Science University, Portland, Oregon.
authors.forename: Alan
authors.initials: A
authors.lastname: Barker
authors.affiliation: 4 Department of Medicine, National Jewish Health, Denver, Colorado.
authors.forename: Charles L
authors.initials: CL
authors.lastname: Daley
authors.affiliation: 5 University of Texas Health Science Center, Tyler, Texas.
authors.forename: David
authors.initials: D
authors.lastname: Griffith
authors.affiliation: 6 NTM Info & Research, Miami, Florida.
authors.forename: Philip
authors.initials: P
authors.lastname: Leitman
authors.affiliation: 6 NTM Info & Research, Miami, Florida.
authors.forename: Amy
authors.initials: A
authors.lastname: Leitman
authors.affiliation: 7 COPD Foundation, Washington, DC.
authors.forename: Elisha
authors.initials: E
authors.lastname: Malanga
authors.affiliation: 8 Department of Medicine, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Theodore K
authors.initials: TK
authors.lastname: Marras
authors.affiliation: 9 Cardiovascular and Pulmonary Branch, National Heart, Lung, and Blood Institute, National Institutes of Health (NIH), Bethesda, Maryland.
authors.forename: Kenneth N
authors.initials: KN
authors.lastname: Olivier
authors.affiliation: 10 Laboratory of Clinical Infectious Disease, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, Maryland.
authors.forename: D Rebecca
authors.initials: DR
authors.lastname: Prevots
authors.affiliation: 7 COPD Foundation, Washington, DC.
authors.forename: Delia
authors.initials: D
authors.lastname: Prieto
authors.affiliation: 11 Department of Psychology, University of Miami, Coral Gables, Florida.
authors.forename: Alexandra L
authors.initials: AL
authors.lastname: Quittner
authors.affiliation: 12 Cystic Fibrosis Foundation, Bethesda, Maryland; and.
authors.forename: William
authors.initials: W
authors.lastname: Skach
authors.affiliation: 7 COPD Foundation, Washington, DC.
authors.forename: John W
authors.initials: JW
authors.lastname: Walsh
authors.affiliation: 13 Division of Infectious Diseases, Public Health, and Preventive Medicine, Oregon Health & Science University, Portland, Oregon.
authors.forename: Kevin L
authors.initials: KL
authors.lastname: Winthrop
mesh_terms: D000900:Anti-Bacterial Agents / Q000009:adverse effects / Q000627:therapeutic use*; D001007:Anxiety; D003226:Congresses as Topic; D003863:Depression; D006801:Humans; D008171:Lung Diseases / Q000175:diagnosis* / Q000188:drug therapy / Q000382:microbiology; D009165:Mycobacterium Infections, Nontuberculous / Q000175:diagnosis* / Q000188:drug therapy; D009170:Nontuberculous Mycobacteria / Q000302:isolation & purification; D063868:Patient Outcome Assessment; D011379:Prognosis; D011788:Quality of Life; D012008:Recurrence; D012017:Referral and Consultation; D012106:Research / Q000639:trends*
chemical_list: D000900:Anti-Bacterial Agents
keywords: nontuberculous mycobacteria; pulmonary disease; quality of life