Fernández Pérez, E. R., Kong, A. M., Raimundo, K., Koelsch, T. L., Kulkarni, R., & Cole, A. L. (2018). Epidemiology of Hypersensitivity Pneumonitis among an Insured Population in the United States: A Claims-based Cohort Analysis. Annals of the American Thoracic Society, 15(4), 460–469. https://doi.org/10.1513/AnnalsATS.201704-288OC.
Article
PubMed
Google Scholar
Vasakova, M., Selman, M., Morell, F., Sterclova, M., Molina-Molina, M., & Raghu, G. (2019). Hypersensitivity pneumonitis: current concepts of pathogenesis and potential targets for treatment. American Journal of Respiratory and Critical Care Medicine, 200(3), 301–308. https://doi.org/10.1164/rccm.201903-0541PP.
Article
CAS
PubMed
Google Scholar
Flaherty, K. R., Wells, A. U., Cottin, V., Devaraj, A., Walsh, S. L. F., Inoue, Y., … INBUILD Trial Investigators (2019). Nintedanib in progressive fibrosing interstitial lung diseases. The New England Journal of Medicine, 381(18), 1718–1727. https://doi.org/10.1056/NEJMoa1908681.
Article
CAS
PubMed
Google Scholar
Richeldi, L., du Bois, R. M., Raghu, G., Azuma, A., Brown, K. K., Costabel, U., & Trial Investigators, …. I. N. P. U. L. S. I. S. (2014). Efficacy and safety of nintedanib in idiopathic pulmonary fibrosis. The New England Journal of Medicine, 370(22), 2071–2082. https://doi.org/10.1056/NEJMoa1402584.
Article
CAS
PubMed
Google Scholar
King, T. E., Bradford, W. Z., Castro-Bernardini, S., Fagan, E. A., Glaspole, I., Glassberg, M. K., … ASCEND Study Group (2014). A phase 3 trial of pirfenidone in patients with idiopathic pulmonary fibrosis. The New England Journal of Medicine, 370(22), 2083–2092. https://doi.org/10.1056/NEJMoa1402582.
Article
CAS
PubMed
Google Scholar
Swigris, J. J., Kuschner, W. G., Jacobs, S. S., Wilson, S. R., & Gould, M. K. (2005). Health-related quality of life in patients with idiopathic pulmonary fibrosis: a systematic review. Thorax, 60(7), 588–594. https://doi.org/10.1136/thx.2004.035220.
Article
CAS
PubMed
PubMed Central
Google Scholar
Chang, J. A., Curtis, J. R., Patrick, D. L., & Raghu, G. (1999). Assessment of health-related quality of life in patients with interstitial lung disease. Chest, 116(5), 1175–1182.
Article
CAS
Google Scholar
Lammi, M. R., Baughman, R. P., Birring, S. S., Russell, A.-M., Ryu, J. H., Scholand, M., … Saketkoo, L. A. (2015). Outcome measures for clinical trials in interstitial lung diseases. Current Respiratory Medicine Reviews, 11(2), 163–174. https://doi.org/10.2174/1573398X11666150619183527.
Article
PubMed
PubMed Central
Google Scholar
Mittoo, S., Frankel, S., LeSage, D., Strand, V., Shah, A. A., Christopher-Stine, L., … Saketkoo, L. A. (2015). 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). Current Respiratory Medicine Reviews, 11(2), 175–183. doi:https://doi.org/10.2174/1573398X11666150619182624
Article
PubMed
PubMed Central
Google Scholar
Natalini, J. G., Swigris, J. J., Morisset, J., Elicker, B. M., Jones, K. D., Fischer, A., … Lee, J. S. (2017). Understanding the determinants of health-related quality of life in rheumatoid arthritis-associated interstitial lung disease. Respiratory Medicine, 127, 1–6. https://doi.org/10.1016/j.rmed.2017.04.002.
Article
PubMed
PubMed Central
Google Scholar
Szentes, B. L., Kreuter, M., Bahmer, T., Birring, S. S., Claussen, M., Waelscher, J., … Schwarzkopf, L. (2018). Quality of life assessment in interstitial lung diseases:a comparison of the disease-specific K-BILD with the generic EQ-5D-5L. Respiratory Research, 19(1), 101. https://doi.org/10.1186/s12931-018-0808-x.
Article
PubMed
PubMed Central
Google Scholar
Russell, A.-M., Sprangers, M. A. G., Wibberley, S., Snell, N., Rose, D. M., & Swigris, J. J. (2015). The need for patient-centred clinical research in idiopathic pulmonary fibrosis. BMC Medicine, 13, 240. https://doi.org/10.1186/s12916-015-0475-4.
Article
PubMed
PubMed Central
Google Scholar
Wilson, I. B., & Cleary, P. D. (1995). Linking Clinical Variables with Health-Related Quality of Life. A Conceptual Model of Patient Outcomes. JAMA, 273(1), 59–65.
Article
CAS
Google Scholar
Lubin, M., Chen, H., Elicker, B., Jones, K. D., Collard, H. R., & Lee, J. S. (2014). A comparison of health-related quality of life in idiopathic pulmonary fibrosis and chronic hypersensitivity pneumonitis. Chest, 145(6), 1333–1338. https://doi.org/10.1378/chest.13-1984.
Article
PubMed
PubMed Central
Google Scholar
Aronson, K. I., Hayward, B. J., Robbins, L., Kaner, R. J., Martinez, F. J., & Safford, M. M. (2019). ‘It’s difficult, it’s life changing what happens to you’ patient perspective on life with chronic hypersensitivity pneumonitis: a qualitative study. BMJ Open Respiratory Research, 6(1), e000522. https://doi.org/10.1136/bmjresp-2019-000522.
Article
PubMed Central
Google Scholar
Jones, P. W., Quirk, F. H., & Baveystock, C. M. (1991). The st george’s respiratory questionnaire. Respiratory Medicine, 85 Suppl B, 25–31; discussion 33. https://doi.org/10.1016/s0954-6111(06)80166-6.
Article
CAS
PubMed
Google Scholar
Rabin, R., & Charro, F. d. (2001). EQ-5D: a measure of health status from the EuroQol Group. Annals of Medicine, 33(5), 337–343. https://doi.org/10.3109/07853890109002087.
Article
CAS
PubMed
Google Scholar
Brazier, J. E., Harper, R., Jones, N. M., O’Cathain, A., Thomas, K. J., Usherwood, T., & Westlake, L. (1992). Validating the SF-36 health survey questionnaire: new outcome measure for primary care. BMJ (Clinical Research Ed.), 305(6846), 160–164. https://doi.org/10.1136/bmj.305.6846.160.
Article
CAS
Google Scholar
Patel, A. S., Siegert, R. J., Brignall, K., Gordon, P., Steer, S., Desai, S. R., … Birring, S. S. (2012). The development and validation of the King’s Brief Interstitial Lung Disease (K-BILD) health status questionnaire. Thorax, 67(9), 804–810. https://doi.org/10.1136/thoraxjnl-2012-201581.
Article
PubMed
Google Scholar
Morisset, J., Johannson, K. A., Jones, K. D., Wolters, P. J., Collard, H. R., Walsh, S. L. F., & Delphi Collaborators, …. H. P. (2017). Identification of diagnostic criteria for chronic hypersensitivity pneumonitis: an international modified delphi survey. American Journal of Respiratory and Critical Care Medicine, 197(8), 1036–1044. https://doi.org/10.1164/rccm.201710-1986OC.
Article
PubMed
Google Scholar
Raghu, G., Document, S., Remy-Jardin, M., Ryerson, C. J., Myers, J. L., Kreuter, M., … American Thoracic Society, Japanese Respiratory Society, and Asociacion Latinoamericana de Torax (2020). Diagnosis of hypersensitivity pneumonitis in adults: an official ATS/JRS/ALAT clinical practice guideline. American Journal of Respiratory and Critical Care Medicine, 202(3), e36–e69. https://doi.org/10.1164/rccm.202005-2032ST.
Article
PubMed
PubMed Central
Google Scholar
Nogueira, R., Melo, N., Novais E Bastos, H., Martins, N., Delgado, L., Morais, A., & C Mota, P. (2018). Hypersensitivity pneumonitis: Antigen diversity and disease implications. Pulmonology, 25(2), 97–108. https://doi.org/10.1016/j.pulmoe.2018.07.003.
Article
PubMed
Google Scholar
Fernández Pérez, E. R., Swigris, J. J., Forssén, A. V., Tourin, O., Solomon, J. J., Huie, T. J., … Brown, K. K. (2013). Identifying an inciting antigen is associated with improved survival in patients with chronic hypersensitivity pneumonitis. Chest, 144(5), 1644–1651. https://doi.org/10.1378/chest.12-2685.
Article
PubMed
PubMed Central
Google Scholar
Patrick, D. L., Burke, L. B., Gwaltney, C. J., Leidy, N. K., Martin, M. L., Molsen, E., & Ring, L. (2011). Content validity--establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO Good Research Practices Task Force report: part 2--assessing respondent understanding. Value in Health, 14(8), 978–988. https://doi.org/10.1016/j.jval.2011.06.013.
Article
PubMed
Google Scholar
Patrick, D. L., Burke, L. B., Gwaltney, C. J., Leidy, N. K., Martin, M. L., Molsen, E., & Ring, L. (2011). Content validity--establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: part 1--eliciting concepts for a new PRO instrument. Value in Health, 14(8), 967–977. https://doi.org/10.1016/j.jval.2011.06.014.
Article
PubMed
Google Scholar
Hofmeyer, A., Sheingold, B. H., & Taylor, R. (2015). Do you understand what I mean? how cognitive interviewing can strengthen valid, reliable study instruments and dissemination products. Journal of International Education Research (JIER), 11(4), 261. https://doi.org/10.19030/jier.v11i4.9460.
Article
Google Scholar
Brédart, A., Marrel, A., Abetz-Webb, L., Lasch, K., & Acquadro, C. (2014). Interviewing to develop Patient-Reported Outcome (PRO) measures for clinical research: eliciting patients’ experience. Health and Quality of Life Outcomes, 12, 15. https://doi.org/10.1186/1477-7525-12-15.
Article
PubMed
PubMed Central
Google Scholar
Sandelowski, M. (2000). Combining qualitative and quantitative sampling, data collection, and analysis techniques in mixed-method studies. Research in Nursing & Health, 23(3), 246–255. https://doi.org/10.1002/1098-240X(200006)23:3<246::AID-NUR9>3.0.CO;2-H.
Article
CAS
Google Scholar
Food and Drug Administration. (2009). Guidance For Industry Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims. Retrieved from https://www.fda.gov/media/77832/download
Google Scholar
Dicicco-Bloom, B., & Crabtree, B. F. (2006). The qualitative research interview. Medical Education, 40(4), 314–321. https://doi.org/10.1111/j.1365-2929.2006.02418.x.
Article
PubMed
Google Scholar
Drennan, J. (2003). Cognitive interviewing: verbal data in the design and pretesting of questionnaires. Journal of Advanced Nursing, 42(1), 57–63. https://doi.org/10.1046/j.1365-2648.2003.02579.x.
Article
PubMed
Google Scholar
Shafer, K., & Lohse, B.. (n.d.). How to Conduct a Cognitive Interview - A Nutrition Education Example. Retrieved from https://nifa.usda.gov/sites/default/files/resource/how-to-conduct-a-cognitive-interview.pdf
William Davidson Institute. (n.d.). Cognitive Interview Guide Developed by the Performance Measurement Initiative. Retrieved from https://wdi.umich.edu/wp-content/uploads/Cognitive-Interview-Guide.pdf
Washington Group on Disability Statistics. (2006). Appendix 4: Cognitive Testing Interview Guide.
Google Scholar
Guest, G., Namey, E., & Chen, M. (2020). A simple method to assess and report thematic saturation in qualitative research. PLoS One, 15(5), e0232076. https://doi.org/10.1371/journal.pone.0232076.
Article
CAS
PubMed
PubMed Central
Google Scholar
Saunders, B., Sim, J., Kingstone, T., Baker, S., Waterfield, J., Bartlam, B., … Jinks, C. (2018). Saturation in qualitative research: exploring its conceptualization and operationalization. Quality & Quantity, 52(4), 1893–1907. https://doi.org/10.1007/s11135-017-0574-8.
Article
Google Scholar
Fusch, P., & Ness, L. (2015). Are We There Yet? Data Saturation in Qualitative Research. The Qualitative Report, 20(9), 1408–1416.
Google Scholar
Paz, S. H., Liu, H., Fongwa, M. N., Morales, L. S., & Hays, R. D. (2009). Readability estimates for commonly used health-related quality of life surveys. Quality of Life Research, 18(7), 889–900. https://doi.org/10.1007/s11136-009-9506-y.
Article
PubMed
PubMed Central
Google Scholar
Terblanche (2010). Examining the readability of patient-informed consent forms. Open Access Journal of Clinical Trials, 157. https://doi.org/10.2147/OAJCT.S13608.
Paz, S. H., Jones, L., Calderón, J. L., & Hays, R. D. (2017). Readability and comprehension of the geriatric depression scale and PROMIS® physical function items in older african americans and latinos. The Patient, 10(1), 117–131. https://doi.org/10.1007/s40271-016-0191-y.
Article
PubMed
PubMed Central
Google Scholar
Hanak, V., Golbin, J. M., & Ryu, J. H. (2007). Causes and presenting features in 85 consecutive patients with hypersensitivity pneumonitis. Mayo Clinic Proceedings, 82(7), 812–816. https://doi.org/10.4065/82.7.812.
Article
PubMed
Google Scholar
Pereira, C. A., Gimenez, A., Kuranishi, L., & Storrer, K. (2016). Chronic hypersensitivity pneumonitis. Journal of Asthma and Allergy, 9, 171–181. https://doi.org/10.2147/JAA.S81540.
Article
CAS
PubMed
PubMed Central
Google Scholar
Stull, D. E., Leidy, N. K., Parasuraman, B., & Chassany, O. (2009). Optimal recall periods for patient-reported outcomes: challenges and potential solutions. Current Medical Research and Opinion, 25(4), 929–942. https://doi.org/10.1185/03007990902774765.
Article
PubMed
Google Scholar
Busija, L., Pausenberger, E., Haines, T. P., Haymes, S., Buchbinder, R., & Osborne, R. H. (2011). Adult measures of general health and health-related quality of life: Medical Outcomes Study Short Form 36-Item (SF-36) and Short Form 12-Item (SF-12) Health Surveys, Nottingham Health Profile (NHP), Sickness Impact Profile (SIP), Medical Outcomes Study Short Form 6D (SF-6D), Health Utilities Index Mark 3 (HUI3), Quality of Well-Being Scale (QWB), and Assessment of Quality of Life (AQoL). Arthritis Care & Research, 63(Suppl 11), S383–S412. https://doi.org/10.1002/acr.20541.
Article
Google Scholar
Keller, S. D., Bayliss, M. S., Ware, J. E., Hsu, M. A., Damiano, A. M., & Goss, T. F. (1997). Comparison of responses to SF-36 Health Survey questions with one-week and four-week recall periods. Health Services Research, 32(3), 367–384.
CAS
PubMed
PubMed Central
Google Scholar
www.healthstatus.sgul.ac.uk/SGRQ_download/Original English version.pdf. (n.d.).
Rector, T. S., & Cohn, J. N. (1992). Assessment of patient outcome with the Minnesota Living with Heart Failure questionnaire: reliability and validity during a randomized, double-blind, placebo-controlled trial of pimobendan. Pimobendan Multicenter Research Group. American Heart Journal, 124(4), 1017–1025. https://doi.org/10.1016/0002-8703(92)90986-6.
Article
CAS
PubMed
Google Scholar
Coyne, K. S., Harrington, A., Currie, B. M., Chen, J., Gillard, P., & Spies, J. B. (2019). Psychometric validation of the 1-month recall Uterine Fibroid Symptom and Health-Related Quality of Life questionnaire (UFS-QOL). Journal of Patient-Reported Outcomes, 3(1), 57. https://doi.org/10.1186/s41687-019-0146-x.
Article
PubMed
PubMed Central
Google Scholar
Wilson, S. R., Mulligan, M. J., Ayala, E., Chausow, A., Huang, Q., Knowles, S. B., … Wise, R. A. (2018). A new measure to assess asthma’s effect on quality of life from the patient’s perspective. The Journal of Allergy and Clinical Immunology, 141(3), 1085–1095. https://doi.org/10.1016/j.jaci.2017.02.047.
Article
PubMed
Google Scholar
Madans, J., Miller, K., Maitland, A., & Willis, G. (Eds.) (2011). Question evaluation methods: contributing to the science of data quality. Hoboken: Wiley. https://doi.org/10.1002/9781118037003.
Book
Google Scholar
Davis, T. C., Crouch, M. A., Wills, G., Miller, S., & Abdehou, D. M. (1990). The gap between patient reading comprehension and the readability of patient education materials. The Journal of Family Practice, 31(5), 533–538.
CAS
PubMed
Google Scholar
Cotugna, N., Vickery, C. E., & Carpenter-Haefele, K. M. (2005). Evaluation of literacy level of patient education pages in health-related journals. Journal of Community Health, 30(3), 213–219. https://doi.org/10.1007/s10900-004-1959-x.
Article
PubMed
Google Scholar
Leidy, N. K., & Vernon, M. (2008). Perspectives on Patient-Reported Outcomes. PharmacoEconomics, 26(5), 363–370. https://doi.org/10.2165/00019053-200826050-00002.
Article
PubMed
Google Scholar
De Sadeleer, L. J., Hermans, F., De Dycker, E., Yserbyt, J., Verschakelen, J. A., Verbeken, E. K., … Wuyts, W. A. (2018). Effects of Corticosteroid Treatment and Antigen Avoidance in a Large Hypersensitivity Pneumonitis Cohort: A Single-Centre Cohort Study. Journal of Clinical Medicine, 8(1). https://doi.org/10.3390/jcm8010014.
Wang, P., Jones, K. D., Urisman, A., Elicker, B. M., Urbania, T., Johannson, K. A., … Koth, L. L. (2017). Pathologic findings and prognosis in a large prospective cohort of chronic hypersensitivity pneumonitis. Chest, 152(3), 502–509. https://doi.org/10.1016/j.chest.2017.02.011.
Article
PubMed
Google Scholar