Patient reported distress can aid clinical decision making in idiopathic pulmonary fibrosis: analysis of the PROFILE cohort

Stewart, Iain; McKeever, Tricia M.; Braybrooke, Rebecca; Oballa, Eunice; Simpson, Juliet K.; Maher, Toby M.; Marshall, Richard P.; Lukey, Pauline T.; Fahy, William A; Jenkins, Gisli; Saini, Gauri

doi:10.1183/13993003.01925-2018

Cited by 5 publications

(2 citation statements)

References 33 publications

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“…At the first visit, 40 mL of blood will be obtained, full lung function tests and a 6 min walk test will be performed. Participants will also be asked to complete QoL Questionnaires (Medical Research Council Dyspnoea Scale,20 Leicester Cough Questionnaire,21 IPF-abridged Profile for Assessment and Referral to Care,22 King’s Brief ILD Questionnaire23 and EQ-5D-5L) 24. If consent is given for optional bronchoscopy, this will be subsequently performed and bronchoalveolar lavage carried out.…”

Section: Methods and Analysismentioning

confidence: 99%

The Its Not JUST Idiopathic pulmonary fibrosis Study (INJUSTIS): description of the protocol for a multicentre prospective observational cohort study identifying biomarkers of progressive fibrotic lung disease

et al. 2019

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IntroductionThe Its Not JUST Idiopathic pulmonary fibrosis Study (INJUSTIS) is a multicentre, prospective, observational cohort study. The aims of this study are to identify genetic, serum and other biomarkers that may identify specific molecular mechanisms, reflecting disease endotypes that are shared among patients with progressive pulmonary fibrosis regardless of aetiology. Furthermore, it is anticipated that these biomarkers will help predict fibrotic activity that may identify patterns of disease behaviour with greater accuracy than current clinical phenotyping.Methods and analysis200 participants with the multidisciplinary team confirmed fibrotic lung disease (50 each of rheumatoid-interstitial lung disease (ILD), asbestosis, chronic hypersensitivity pneumonitis and unclassifiable ILD) and 50 idiopathic pulmonary fibrosis participants, recruited as positive controls, will be followed up for 2 years. Participants will have blood samples, lung function tests, quality of life questionnaires and a subgroup will be offered bronchoscopy. Participants will also be given the option of undertaking blinded home handheld spirometry for the first 3 months of the study. The primary end point will be identification of a biomarker that predicts disease progression, defined as 10% relative change in forced vital capacity (FVC) or death at 12 months.Ethics and disseminationThe trial has received ethical approval from the National Research Ethics Committee Nottingham (18/EM/0139). All participants must provide written informed consent. The trial will be overseen by the INJUSTIS steering group that will include a patient representative, and an independent chairperson. The results from this study will be submitted for publication in peer-reviewed journals and disseminated at regional and national conferences.Trial registration numberNCT03670576.

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Section: Methods and Analysismentioning

confidence: 99%

The Its Not JUST Idiopathic pulmonary fibrosis Study (INJUSTIS): description of the protocol for a multicentre prospective observational cohort study identifying biomarkers of progressive fibrotic lung disease

et al. 2019

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“…It is designed to facilitate health-care providers in identifying patients in need of specialized supportive and PC services (Ahmedzai et al 2005). SPARC has been used in numerous research projects to assess the PC needs of patients with various medical conditions Gardiner et al 2013;Maguire et al 2020;Rutchik et al 2010;Stewart et al 2019;Wilcock et al 2019) and has been validated in English, Polish, Korean, and Taiwan Chinese (Hughes et al 2015;Kwon et al 2021;Leppert et al 2012;Tsai et al 2023).…”

Section: Introductionmentioning

confidence: 99%

Translation and linguistic validation of the Sheffield Profile for Assessment and Referral for Care (SPARC) to Colombian Spanish

Moreno,

Mendieta,

de Vries

et al. 2024

Pall Supp Care

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Objectives We aimed to translate and linguistically and cross-culturally validate Sheffield Profile for Assessment and Referral for Care (SPARC) in Spanish for Colombia (SPARC-Sp). Methods The linguistic validation of SPARC followed a standard methodology. We conducted focus groups to assess the comprehensibility and feasibility. The acceptability was assessed using a survey study with potential users. Results The comprehensibility assessment showed that additional adjustments to those made during the translation-back-translation process were required to apply SPARC-Sp in rural and low-schooled populations. It also identified the need for alternative administration mechanisms for illiterate people. The acceptability survey showed that potential users found SPARC-Sp as not only acceptable but also highly desirable. However, they desired to expand the number of items in all domains. Significance of results Beyond the semantic and conceptual validity attained through the back-translation process, actual cultural validity could be acquired thanks to the comprehensibility tests. Although extending the instrument is something potential users would like to do, it would make it less feasible to utilize the SPARC-Sp in clinical settings. Nonetheless, the instrument might benefit from the inclusion of a domain that evaluates challenges encountered when accessing the health-care system. For communities lacking literacy, alternate administration methods must also be considered.

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At a crossroads: how to translate the roles of PI3K in oncogenic and metabolic signalling into improvements in cancer therapy

Vasan

Cantley

2022

Nat Rev Clin Oncol

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Patient reported distress can aid clinical decision making in idiopathic pulmonary fibrosis: analysis of the PROFILE cohort

Abstract: Responses to a palliative care survey from a clinical cohort of over 240 IPF patients were used to create a concise eleven-item distress measure that can help predict disease prognosis with similar reliability to lung function recordings.

Cited by 5 publications

References 33 publications

The Its Not JUST Idiopathic pulmonary fibrosis Study (INJUSTIS): description of the protocol for a multicentre prospective observational cohort study identifying biomarkers of progressive fibrotic lung disease

The Its Not JUST Idiopathic pulmonary fibrosis Study (INJUSTIS): description of the protocol for a multicentre prospective observational cohort study identifying biomarkers of progressive fibrotic lung disease

Translation and linguistic validation of the Sheffield Profile for Assessment and Referral for Care (SPARC) to Colombian Spanish

At a crossroads: how to translate the roles of PI3K in oncogenic and metabolic signalling into improvements in cancer therapy

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