PROMising developments in IPF patient-reported outcome measures

Nolan, Claire M.; Birring, Surinder S.

doi:10.1183/13993003.02312-2021

Cited by 6 publications

(1 citation statement)

References 26 publications

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“…Ideally a PROM used in clinical practice should be brief; easy to understand, complete and score; and straightforward to interpret by healthcare providers and people living with PF. PROMs used in PF trials are too long for clinical use [79]. There is an increasing interest in shorter PRO/s such as VAS and NRS [80,81,82], but as noted above, additional research is needed to improve understanding of what VASes and NRS are telling us from visit to visit.…”

Section: Measuring Health-related Quality Of Life In Clinical Practicementioning

confidence: 99%

Integrating the assessment of quality of life in care and research in pulmonary fibrosis

Aronson,

Swigris,

Wijsenbeek

2024

Current Opinion in Pulmonary Medicine

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Purpose of review Pulmonary fibrosis (PF) negatively influences health-related quality of life (HRQOL). Patients living with PF have voiced the desire for a focus on symptoms and HRQOL in both disease monitoring and treatment decisions. Recent findings Currently available disease modifying treatments do little to impact HRQOL. Newer studies evaluating pharmacologic and nonpharmacologic therapies targeting symptoms and HRQOL in PF have been conducted with some promising results. There is increasing recognition of the importance of incorporating HRQOL as a higher tier endpoint in clinical trials. Disease-specific measure of HRQOL have been developed for those living with PF, and there is ongoing work to better understand the validity and reliability characteristics of these tools. In addition to research, there is recognition of the potential benefits of measuring HRQOL and symptoms in clinical practice in facilitate integrating patient perspective into care and allow for more personalized treatment approaches. Summary There is increased momentum to discover treatments that impact HRQOL in PF. More work is desperately needed to identify better treatment targets, and to incorporate HRQOL and symptoms as higher tier endpoints in clinical trials. Further work is also needed to address the practicalities of integrating HRQOL measurement into clinical care.

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Section: Measuring Health-related Quality Of Life In Clinical Practicementioning

confidence: 99%

Integrating the assessment of quality of life in care and research in pulmonary fibrosis

Aronson,

Swigris,

Wijsenbeek

2024

Current Opinion in Pulmonary Medicine

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Home monitoring in interstitial lung diseases

Wijsenbeek¹,

Moor²,

Johannson³

et al. 2023

The Lancet Respiratory Medicine

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Patient‐Reported Outcome Scale for Idiopathic Pulmonary Fibrosis: Development and Validation in China

Xie,

Zhang,

Ren

et al. 2024

J Evidence Based Medicine

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PurposeTo develop and validate the patient‐reported outcome scale for idiopathic pulmonary fibrosis (IPF‐PRO) to provide a reliable and scientific measure for clinical trials on idiopathic pulmonary fibrosis (IPF).MethodsWe analyzed the relevant literature and medical records and conducted interviews and panel discussions to develop the conceptual framework and generate the item pool. We subjected the collected items to removal, mergence, or modification to form the initial scale through a qualitative review by experts and patients. Subsequently, we conducted two field surveys to select items for the final scale based on the classical test theory and item response theory (IRT). Finally, we conducted a formal survey to assess the measurement properties of the IPF‐PRO.ResultsThe IPF‐PRO included 18 items across four domains, namely physiology, psychology, environment, and satisfaction. The Cronbach's α coefficient and generalized coefficient of the IPF‐PRO were 0.917 and 0.931, respectively. The content validity, structural validity, criterion validity, and discriminant validity all met relevant standards. The results of the item analysis based on IRT were considered acceptable. The ordinal logistic regression analysis findings showed that all items' p values were greater than 0.01 when the domain scores matched variables. The IPF‐PRO response and completion rates were both 100%. The median completion time was 7 min [IRQ = 3.7 min (Q3 = 9.0 min, Q1 = 5.3 min)].ConclusionThe 18‐item IPF‐PRO developed in this study has demonstrated good reliability and validity, indicating that it is a reliable and scientific measure for IPF clinical trials.

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PROMising developments in IPF patient-reported outcome measures

Abstract: PROMs have an important role in the assessment of people with IPF. The studies published in this issue provide two promising instruments that, following complete psychometric evaluation, could easily be used in the clinic setting. https://bit.ly/3hirlvY

Cited by 6 publications

References 26 publications

Integrating the assessment of quality of life in care and research in pulmonary fibrosis

Integrating the assessment of quality of life in care and research in pulmonary fibrosis

Home monitoring in interstitial lung diseases

Patient‐Reported Outcome Scale for Idiopathic Pulmonary Fibrosis: Development and Validation in China

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