Abstract
Background: Idiopathic pulmonary fibrosis (IPF) is a debilitating condition, yet health-related quality of life (HRQOL) data are limited. The primary objective was to evaluate HRQOL in IPF using measures from the Patient Reported Outcomes Measurement Information System (PROMIS). The secondary objective was to examine the association between key symptoms and HRQOL.
Methods: Individuals with IPF were recruited via patient advocacy organizations to complete an online survey consisting of PROMIS-29 health profile, PROMIS-Dyspnea, dyspnea measured by Modified Medical Research Council Dyspnea Scale (MMRC), self-reported cough, and cough subscale of the ATAQ (A Tool to Assess Quality of life)-IPF. PROMIS-29 scores have mean=50, SD=10 in the US general population; PROMIS-Dyspnea scores are referenced to a COPD sample.
Results: The 275 survey participants showed worse mean PROMIS-29 scores than the general population.
Dyspnea severity was associated with worse mean PROMIS-29 scores. PROMIS-Dyspnea (mean=58.7) and Functional Limitations Due to Dyspnea (mean=58.4) scores were worse than the COPD reference population. Cough severity was associated with worse HRQOL measured by ATAQ-IPF.
Conclusions: Patients with IPF report substantial deficits in HRQOL, particularly with respect to physical function, anxiety, pain, depression and fatigue. Patients suffering from dyspnea and cough had poorer HRQOL.
- © 2014 ERS