Literature DB >> 33443657

Establishing content-validity of a disease-specific health-related quality of life instrument for patients with chronic hypersensitivity pneumonitis.

Kerri I Aronson1, Maha Ali2, Evgeniya Reshetynak2, Robert J Kaner3,4, Fernando J Martinez3, Monika M Safford2, Laura C Pinheiro2.   

Abstract

BACKGROUND: Chronic Hypersensitivity Pneumonitis (CHP) is caused by an immune mediated response in the lung tissue after exposure to an inhaled environmental antigenic stimulant. We previously documented the ways in which CHP impacts patients' lives and have now developed a disease-specific instrument, the CHP-HRQOL instrument, to measure health-related quality of life (HRQOL). The objective of this study was to assess content validity for the CHP-HRQOL.
METHODS: Cognitive interviews were conducted among adults with CHP. The instrument was revised and refined between each round of interviews. Feedback was obtained on the instructions, items, response options, and recall period. Items where participants had difficulty with comprehension, wording, or misinterpretation were marked by the interviewer and participant feedback was reviewed to make revisions, add or delete items when appropriate. Readability statistics were calculated using Flesch-Kincaid grade level and reading ease scores.
RESULTS: Ten participants were interviewed over three rounds, with revisions made to the questionnaire in an iterative process. In the initial 39 item instrument, we identified 7 items where two or more participants reported difficulty. Participants preferred a four-week recall period (compared to a two-week recall period) and response options with a 5-point response scale. The final version of the CHP-HRQOL includes 40 items with a median reading level between 6th and 7th grade.
CONCLUSION: The CHP-HRQOL instrument demonstrated high content validity and is ready for psychometric testing in further validation studies.

Entities:  

Keywords:  Chronic hypersensitivity pneumonitis; Cognitive interviewing; Health-related quality of life

Year:  2021        PMID: 33443657     DOI: 10.1186/s41687-020-00282-x

Source DB:  PubMed          Journal:  J Patient Rep Outcomes        ISSN: 2509-8020


  38 in total

Review 1.  Hypersensitivity Pneumonitis: Current Concepts of Pathogenesis and Potential Targets for Treatment.

Authors:  Martina Vasakova; Moises Selman; Ferran Morell; Martina Sterclova; Maria Molina-Molina; Ganesh Raghu
Journal:  Am J Respir Crit Care Med       Date:  2019-08-01       Impact factor: 21.405

2.  Understanding the determinants of health-related quality of life in rheumatoid arthritis-associated interstitial lung disease.

Authors:  Jake G Natalini; Jeff J Swigris; Julie Morisset; Brett M Elicker; Kirk D Jones; Aryeh Fischer; Harold R Collard; Joyce S Lee
Journal:  Respir Med       Date:  2017-04-05       Impact factor: 3.415

Review 3.  Health-related quality of life in patients with idiopathic pulmonary fibrosis: a systematic review.

Authors:  J J Swigris; W G Kuschner; S S Jacobs; S R Wilson; M K Gould
Journal:  Thorax       Date:  2005-07       Impact factor: 9.139

4.  Nintedanib in Progressive Fibrosing Interstitial Lung Diseases.

Authors:  Kevin R Flaherty; Athol U Wells; Vincent Cottin; Anand Devaraj; Simon L F Walsh; Yoshikazu Inoue; Luca Richeldi; Martin Kolb; Kay Tetzlaff; Susanne Stowasser; Carl Coeck; Emmanuelle Clerisme-Beaty; Bernd Rosenstock; Manuel Quaresma; Thomas Haeufel; Rainer-Georg Goeldner; Rozsa Schlenker-Herceg; Kevin K Brown
Journal:  N Engl J Med       Date:  2019-09-29       Impact factor: 91.245

5.  Outcome Measures for Clinical Trials in Interstitial Lung Diseases.

Authors:  Matthew R Lammi; Robert P Baughman; Surinder S Birring; Anne-Marie Russell; Jay H Ryu; Marybeth Scholand; Oliver Distler; Daphne LeSage; Catherine Sarver; Katerina Antoniou; Kristin B Highland; Otylia Kowal-Bielecka; Joseph A Lasky; Athol U Wells; Lesley Ann Saketkoo
Journal:  Curr Respir Med Rev       Date:  2015

6.  Epidemiology of Hypersensitivity Pneumonitis among an Insured Population in the United States: A Claims-based Cohort Analysis.

Authors:  Evans R Fernández Pérez; Amanda M Kong; Karina Raimundo; Tilman L Koelsch; Rucha Kulkarni; Ashley L Cole
Journal:  Ann Am Thorac Soc       Date:  2018-04

7.  Patient Perspectives in OMERACT Provide an Anchor for Future Metric Development and Improved Approaches to Healthcare Delivery in Connective Tissue Disease Related Interstitial Lung Disease (CTD-ILD).

Authors:  Shikha Mittoo; Sid Frankel; Daphne LeSage; Vibeke Strand; Ami A Shah; Lisa Christopher-Stine; Sonye Danoff; Laura K Hummers; Jeffery J Swigris; Dörte Huscher; Angela M Christensen; Sophia L Cenac; Jen K Erbil; Sancia Ferguson; Ignacio Garcia-Valladares; Harmanjot K Grewal; Ana-Maria Orbai; Katherine Clegg Smith; Maithy Tran; Clifton O Bingham; Flavia V Castelino; Aryeh Fischer; Lesley Ann Saketkoo
Journal:  Curr Respir Med Rev       Date:  2015-06

8.  A phase 3 trial of pirfenidone in patients with idiopathic pulmonary fibrosis.

Authors:  Talmadge E King; Williamson Z Bradford; Socorro Castro-Bernardini; Elizabeth A Fagan; Ian Glaspole; Marilyn K Glassberg; Eduard Gorina; Peter M Hopkins; David Kardatzke; Lisa Lancaster; David J Lederer; Steven D Nathan; Carlos A Pereira; Steven A Sahn; Robert Sussman; Jeffrey J Swigris; Paul W Noble
Journal:  N Engl J Med       Date:  2014-05-18       Impact factor: 91.245

9.  Efficacy and safety of nintedanib in idiopathic pulmonary fibrosis.

Authors:  Luca Richeldi; Roland M du Bois; Ganesh Raghu; Arata Azuma; Kevin K Brown; Ulrich Costabel; Vincent Cottin; Kevin R Flaherty; David M Hansell; Yoshikazu Inoue; Dong Soon Kim; Martin Kolb; Andrew G Nicholson; Paul W Noble; Moisés Selman; Hiroyuki Taniguchi; Michèle Brun; Florence Le Maulf; Mannaïg Girard; Susanne Stowasser; Rozsa Schlenker-Herceg; Bernd Disse; Harold R Collard
Journal:  N Engl J Med       Date:  2014-05-18       Impact factor: 91.245

10.  Quality of life assessment in interstitial lung diseases:a comparison of the disease-specific K-BILD with the generic EQ-5D-5L.

Authors:  Boglárka Lilla Szentes; Michael Kreuter; Thomas Bahmer; Surinder S Birring; Martin Claussen; Julia Waelscher; Reiner Leidl; Larissa Schwarzkopf
Journal:  Respir Res       Date:  2018-05-25
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