Evidence map›Paper›PMID 42070174›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2026

Development of the novel nontuberculous mycobacterial pulmonary disease symptoms scale (NTM-SS).

E Henkle, N F Dieckmann, H Franklin, D Cella, G Megson, C L Daley, P A Flume, P J McShane, K L Winthrop, A L Quittner

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Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

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0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

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2 · The registry

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3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Observational
4 · The record

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5 · Who and what money

Authors and funding

10 authors.

E HenkleOregon Health & Science University, Portland, OR, USA. henkle@ohsu.edu.ORCID http://orcid.org/0000-0002-5190-9383
N F DieckmannOregon Health & Science University, Portland, OR, USA.
H FranklinOregon Health & Science University, Portland, OR, USA.
D CellaNorthwestern University, Chicago, IL, USA.
G MegsonOregon Health & Science University, Portland, OR, USA.
C L DaleyNational Jewish Health, Denver, CO, USA.
P A FlumeMedical University of South Carolina, Charleston, SC, USA.
P J McShaneUniversity of Texas Health Science Center, Tyler, TX, USA.
K L WinthropOregon Health & Science University, Portland, OR, USA.
A L QuittnerJoe DiMaggio Children's Hospital, Miami, FL, USA.

Funding

U.S. Food and Drug Administration 75F40121C00120
6 · The paper itself

Abstract

aimsNontuberculous mycobacterial pulmonary disease (NTM-PD) is a chronic infection often necessitating long-term, multidrug treatment. Here we report the development of a novel disease-specific patient-reported outcome measure (PROM) for use as a clinical trial endpoint.

methodsWe performed a literature review and conducted semi-structured interviews with adult subjects with NTM-PD recruited from four U.S. clinical sites. Interviews were recorded, transcribed, and consensus coded. NTM Symptom Scale (NTM-SS) items were selected and tested in cognitive interviews. We refined the NTM-SS using theoretical relevance/face validity, exploratory factor analysis (factorial validity), item response theory (IRT) and traditional reliability estimation, and convergent validity testing.

resultsThe concept elicitation interviews identified key symptoms of cough (100%), shortness of breath (98%), fatigue (95%), sputum production (90%), throat clearing (80%), mental fogging (75%), sensitivity to cold (62%), night sweats (55%), poor appetite (53%), chills/feverishness (50%/43%), weight loss (48%), and chest congestion (45%). Within the conceptual framework of Respiratory Symptoms, Fatigue, and other NTM Symptoms, we selected an initial set of 44 items, editing 4 items after cognitive testing. Psychometric testing resulted in 7 subscales (final: 32 items). Scale reliabilities ranged from 0.85 to 0.95. Test–retest reliability was high (r = 0.73–0.88), and subscales showed strong convergent validity with existing measures (r = 0.64–0.87).

conclusionWe identified a 32-item disease-specific PROM with a highly reliable set of 7 subscales. Separately scored NTM-SS subscales allow for selection of appropriate clinical trial endpoints. Further validation, including responsiveness to change, is needed.

Indexed as

Lung DiseasesMycobacterium Infections, NontuberculousPatient Reported Outcome MeasuresAdultAgedFemaleHumansMaleMiddle AgedPsychometricsQuality of LifeReproducibility of ResultsSurveys and QuestionnairesSymptom BurdenUnited StatesDisease-specific patient-reported outcomesHealth-related quality of lifeNontuberculous mycobacteriaPulmonary infection

Identifiers

PMID42070174

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.