HEALTH-RELATED QUALITY OF LIFE (HRQOL) IN PATIENTS WITH IDIOPATHIC PULMONARY FIBROSIS
Author(s)
Yount S1, Beaumont J1, Kaiser K1, Wortman K1, Chen S2, Van Brunt D2, Cella D1
1Northwestern University, Chicago, IL, USA, 2Biogen Idec, Cambridge, MA, USA
OBJECTIVES: Idiopathic pulmonary fibrosis (IPF) is a progressive disease characterized by declining lung function, leading to debilitating limitations on activity which may negatively impact HRQOL. However, HRQOL data in this population 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 chronic obstructive pulmonary disease (COPD) sample. RESULTS: The 275 survey participants showed worse mean PROMIS-29 scores than the general population in all measured domains (mean value: anxiety=63.9; depression=61.9; fatigue=60.1; pain=62.6; sleep disturbance=55.8; physical function=36.2; social role=42.2). Dyspnea severity was associated with worse mean PROMIS-29 scores (all p<0.05). 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. Reliability of PROMIS-29 scores exceeded 0.65 and were moderately correlated with measures of similar constructs. A limitation of the study is that data drawn from a sample from advocacy organizations might not be generalizable to the entire IPF population. 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. These deficits should be monitored in clinical practice and evaluated in investigational trials aiming to improve the HRQOL of IPF patients.
Conference/Value in Health Info
2014-11, ISPOR Europe 2014, Amsterdam, The Netherlands
Value in Health, Vol. 17, No. 7 (November 2014)
Code
PRS74
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Respiratory-Related Disorders