HEALTH-RELATED QUALITY OF LIFE MEASURES IN IDIOPATHIC PULMONARY FIBROSIS: DATA FROM THE IPF-PRO REGISTRY

SESSION TITLE: Diagnosis and Treatment of IPF SESSION TYPE: Original Investigations PRESENTED ON: 10/20/2019 2:15 PM - 3:15 PM PURPOSE: Idiopathic pulmonary fibrosis (IPF) is a devastating and progressive lung disease that impacts different quality of life domains. While various general and symptom-specific quality of life instruments have been applied in IPF, the extent to which each adds value beyond respiratory-specific tools is unknown. The objective of this analysis was to describe the distribution of patient-reported outcomes (PROs) in a national US cohort of patients with IPF, as well as to explore the associations between respiratory-specific and general health PROs. METHODS: We used data from the IPF-PRO Registry, a multicenter, observational registry of patients with IPF that was diagnosed or confirmed at the enrolling center in the past 6 months, to evaluate PROs at the time of enrollment (June 2014 – July 2018). PRO measurements included SGRQ total score as well as domain scores (activity, impact and symptom), cough and sputum assessment questionnaire (CASA-Q) domain scores (cough impact and cough symptoms), EuroQol index score, EuroQol visual analogue score, short form 12 (SF-12) physical component score and SF-12 mental component score. We used Pearson correlation coefficients to explore associations between each of the four SGRQ scores (total and domain-specific) and the six other PROs. As the scale for SGRQ is opposite those of the other measures, values for the six other PROs were reversed before calculating the correlation coefficient. RESULTS: Among 859 patients with available PRO data, the mean SGRQ total score was 40.5 (SD 19.5), in contrast to the previously validated mean score in healthy subjects of 6. In comparing mean domain scores, patients experienced worse quality of life in the SGRQ activity domain compared to the impact domain (55.6 vs. 29.9) as well as the CASA-Q symptom domain compared to the impact domain (59.5 vs. 73.2). Patients also reported worse quality of life in the SF-12 physical domain compared to SF-12 mental domain (38.9 vs. 52.0). Moderate to strong correlations were observed between SGRQ (total as well as all domain scores) and all six other PROs (r range = 0.28 – 0.73). Notably, of all the PROs, the SF-12 mental component score had the weakest correlations with the SGRQ total, activity, impact, and symptom scores. CONCLUSIONS: The deficits in the SGRQ total and domain scores expose the reduced quality of life in patients with IPF. While the SGRQ generally captures data gathered in the other instruments, the SF-12 mental component score may contain additional information that is not represented in the SGRQ. CLINICAL IMPLICATIONS: Patients with IPF experience substantial reductions in quality of life, particularly in activity and symptom domains. Future studies may focus on targeting quality of life interventions in domains most affected in IPF patients. DISCLOSURES: Employee relationship with Boehringer Ingelheim Please note: >$100000 Added 03/11/2019 by Shaun Bender, source=Web Response, value=Salary Employee relationship with Boehringer Ingelheim Pharmaceuticals Please note: >$100000 Added 03/12/2019 by Craig Conoscenti, source=Web Response, value=Salary Advisory Committee Member relationship with Boehringer-Ingelheim Please note: $5001 - $20000 Added 03/12/2019 by Daniel Culver, source=Web Response, value=travel Speaker/Speaker's Bureau relationship with Genentech Please note: $1001 - $5000 Added 03/12/2019 by Daniel Culver, source=Web Response, value=Honoraria Speaker/Speaker's Bureau relationship with Mallinkrodt Please note: $1001 - $5000 Added 03/12/2019 by Daniel Culver, source=Web Response, value=Honoraria Consultant relationship with aTyr Please note: $1001 - $5000 Added 03/12/2019 by Daniel Culver, source=Web Response, value=Consulting fee No relevant relationships by Anne Hellkamp, source=Web Response Employee relationship with Boehringer Ingelheim Pharmaceuticals, Inc. Please note: >$100000 Added 03/14/2019 by Thomas Leonard, source=Web Response, value=Salary No relevant relationships by Megan Neely, source=Web Response Investigator relationship with Novartis Please note: >$100000 Added 02/14/2019 by Emily O'Brien, source=Web Response, value=Grant/Research Investigator relationship with BMS Please note: >$100000 Added 02/14/2019 by Emily O'Brien, source=Web Response, value=Grant/Research Support My spouse/partner as a Employee relationship with Biocryst Please note: >$100000 Added 03/12/2019 by Scott Palmer, source=Web Response, value=Salary PI relationship with BI Please note: >$100000 Added 03/12/2019 by Scott Palmer, source=Web Response, value=Grant/Research Support Funding to coordinate IPF-PRO Registry relationship with Faculty member in DCRI, which receives support from BI Please note: $5001 - $20000 Added 03/14/2019 by Laurie Snyder, source=Web Response, value=Grant/Research Support No relevant relationships by Aparna Swaminathan, source=Web Response Grants received to the institution relationship with Boehringer Ingelheim Please note: >$100000 Added 03/11/2019 by Jamie Todd, source=Web Response, value=Grant/Research Support