Assessing Health Related Quality of Life in Hypersensitivity Pneumonitis
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- STATUS
- Recruiting
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- days left to enroll
- 4
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- participants needed
- 120
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- sponsor
- Weill Medical College of Cornell University
Summary
The objective of this study is to administer and validate a disease specific health related quality of life (HRQOL) survey for patients with Chronic Hypersensitivity Pneumonitis (CHP).
Description
The objective of this study is to administer and validate a disease-specific health related quality of life (HRQOL) survey for patients with Chronic Hypersensitivity Pneumonitis (CHP). The survey items have been developed and revised from prior qualitative research with CHP patients. Potential participants will be recruited from WCMC, the Pulmonary Fibrosis Foundation (PFF) Registry and outside physician referral for the study. Participants will be asked to sign informed consent. At the initial visit participants will be asked to complete the survey and two additional PROs needed for concurrent validity testing. Participants will then be asked to complete the HRQOL survey under study a second time 2 weeks after the initial visit for test-re-test reliability testing. Pulmonary function testing and six minute walk test results will be collected. Pertinent demographic and clinical information will be collected from the patients and their medical records or registry data (if a PFF Registry participant). All information will be entered into a REDCap database for secure data management and storage. Psychometric testing will be performed on the overall survey instrument and the individual items in order to test validity and reliability. The goal is that the survey developed will be a reliable and valid measurement tool for use in both clinical practice and research settings.
Details
| Condition | Health Related Quality of Life, Pulmonary Fibrosis, Extrinsic allergic alveolitis, Pulmonary Disease, Chronic Hypersensitivity Pneumonitis, interstitial lung diseases, Lung Disease, Interstitial lung disease, hypersensitivity pneumonitis |
|---|---|
| Treatment | Chronic Hypersensitivity Pneumonitis Health Related Quality of Life Survey Instrument |
| Clinical Study Identifier | NCT04273867 |
| Sponsor | Weill Medical College of Cornell University |
| Last Modified on | 1 October 2021 |
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