Development and Initial Validation Analyses of the Living with Idiopathic Pulmonary Fibrosis Questionnaire

Swigris, Jeffrey J.; Andrae, David; Churney, Tara; Johnson, Nathan; Scholand, Mary Beth; White, Eric S.; Matsui, Alison; Raimundo, Karina; Evans, Christopher J.

doi:10.1164/rccm.202002-0415oc

Cited by 34 publications

(25 citation statements)

References 34 publications

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“…This suggests that the use of disease-specific PROMs that are validated rigorously and chosen thoughtfully may be more efficacious and may help move the field forward. L-IPF is a recently validated PROM developed specifically for IPF and concordant with FDA guidance [66]. L-IPF assesses symptoms, disease impact and HRQoL, but it only indirectly assesses mood [6].…”

Section: History Of Prom Use In Ild/ipfmentioning

confidence: 99%

Patient-reported outcomes and patient-reported outcome measures in interstitial lung disease: where to go from here?

Kalluri

Luppi

Vancheri³

et al. 2021

Eur Respir Rev

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Patient-reported outcome measures (PROMs), tools to assess patient self-report of health status, are now increasingly used in research, care and policymaking. While there are two well-developed disease-specific PROMs for interstitial lung diseases (ILD) and idiopathic pulmonary fibrosis (IPF), many unmet and urgent needs remain. In December 2019, 64 international ILD experts convened in Erice, Italy to deliberate on many topics, including PROMs in ILD. This review summarises the history of PROMs in ILD, shortcomings of the existing tools, challenges of development, validation and implementation of their use in clinical trials, and the discussion held during the meeting. Development of disease-specific PROMs for ILD including IPF with robust methodology and validation in concordance with guidance from regulatory authorities have increased user confidence in PROMs. Minimal clinically important difference for bidirectional changes may need to be developed. Cross-cultural validation and linguistic adaptations are necessary in addition to robust psychometric properties for effective PROM use in multinational clinical trials. PROM burden of use should be reduced through appropriate use of digital technologies and computerised adaptive testing. Active patient engagement in all stages from development, testing, choosing and implementation of PROMs can help improve probability of success and further growth.

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Section: History Of Prom Use In Ild/ipfmentioning

confidence: 99%

Patient-reported outcomes and patient-reported outcome measures in interstitial lung disease: where to go from here?

Kalluri

Luppi

Vancheri³

et al. 2021

Eur Respir Rev

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“…The Living with IPF (L-IPF) questionnaire was developed to assess symptoms and HRQoL specifically in patients with IPF [12] and incorporated direct input from patients with IPF at each stage of development. Some of the qualitative data used to develop the ATAQ-IPF (A Tool to Assess Quality of life in IPF) [13] informed the development of the L-IPF, together with additional data and analyses conducted for the L-IPF [14]. Because IPF is a subset of progressive fibrosing ILD, and because all forms of progressive fibrosing ILD have similar symptoms, natural history and risk of death, we expect the L-IPF to be equally relevant to patients with any form of progressive fibrosing ILD.…”

Section: Introductionmentioning

confidence: 99%

The Living with Pulmonary Fibrosis questionnaire in progressive fibrosing interstitial lung disease

et al. 2021

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The Living with Idiopathic Pulmonary Fibrosis (L-IPF) questionnaire was developed with substantial input from patients with IPF to assess symptoms and health-related quality of life (HRQoL). Because IPF is the prototypical chronic fibrosing interstitial lung disease (ILD) with a progressive phenotype, we expanded applicability of the L-IPF by deleting the word “idiopathic”, creating the L-PF (Living with Pulmonary Fibrosis) questionnaire, and then assessed its relevance among patients with progressive fibrosing ILDs in one-to-one interviews.Patients in the USA and Germany with any progressive fibrosing ILD other than IPF were asked about their disease and symptoms, completed the 44-item L-PF questionnaire (comprising two modules that assess symptoms and impacts of disease) and then answered a series of debriefing questions. Interviews were recorded, transcribed and coded for qualitative content analysis.Twenty patients were interviewed, but time constraints meant not all were asked about all items. The most frequent diagnoses were rheumatoid arthritis-associated ILD (25%) and mixed connective tissue disease-associated ILD (20%). Almost all patients endorsed the symptoms assessed by the L-PF: shortness of breath (19/20), cough (19/20 patients) and fatigue (18/20). Most patients endorsed impacts of progressive fibrosing ILD on activities of daily living, physical well-being, sleep, emotional well-being, and social aspects of their lives. Most patients had an overall positive impression of the Symptoms module and understood items as intended. All seven patients asked understood the items of the Impacts module.The L-PF contains concepts relevant and important to patients with progressive fibrosing ILD, and items are understood as intended.

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“…In this issue of the Journal , Swigris and colleagues (pp. 1689–1697 ) describe the first steps toward this important outcome ( 8 ). The Living with IPF (L-IPF) questionnaire has 35 items scored on a five-point numerical rating scale that address important symptoms (dyspnea, cough, and low energy) and impacts of IPF.…”

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confidence: 99%

“…The inclusion of an energy domain in the L-IPF questionnaire is a valuable contribution given the burden of fatigue for many patients with IPF ( 5 ). The authors intend to place the L-IPF questionnaire in the public domain ( 8 ), which increases the likelihood that a wide range of researchers and clinicians will choose this tool to measure patient-reported outcomes, in turn generating new knowledge about HRQL in this patient group.…”

mentioning

confidence: 99%

“…In future clinical trials, our HRQL tools may need to be applied to a broader range of patients with progressive lung fibrosis, and it will be important to understand the performance of the L-IPF in this context. In the current study ( 8 ), Swigris and colleagues applied the L-IPF to a patient group typical of those currently considered for clinical trials of drug treatments, with 81% receiving antifibrotic therapy and few patients in GAP (gender, age, and physiology) stage III. Whether the L-IPF is useful across a broader range of patients remains to be established.…”

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confidence: 99%

See 1 more Smart Citation

Patient-reported Outcomes for Clinical Trials in Idiopathic Pulmonary Fibrosis: New Opportunities to Understand How Patients Feel and Function

Holland

Dowman

Smallwood

2020

Am J Respir Crit Care Med

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Development and Initial Validation Analyses of the Living with Idiopathic Pulmonary Fibrosis Questionnaire

Cited by 34 publications

References 34 publications

Patient-reported outcomes and patient-reported outcome measures in interstitial lung disease: where to go from here?

Patient-reported outcomes and patient-reported outcome measures in interstitial lung disease: where to go from here?

The Living with Pulmonary Fibrosis questionnaire in progressive fibrosing interstitial lung disease

Patient-reported Outcomes for Clinical Trials in Idiopathic Pulmonary Fibrosis: New Opportunities to Understand How Patients Feel and Function

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