SYMPTOM BURDEN AND HEALTH RELATED QUALITY OF LIFE IN PATIENTS WITH IDIOPATHIC PULMONARY FIBROSIS IN CLINICAL PRACTICE- INSIGHTS-IPF REGISTRY
Author(s)
Pittrow D1, Klotsche J2, Kreuter M3, Hoeper MM4, Wirtz H5, Koschel D6, Claussen M7, Andreas S8, Grohé C9, Geier S10, Koppe U10, Behr J11
1Technical University Carl Gustav Carus, Dresden, Germany, 2Deutsches Rheuma-Forschungsinstitut, Berlin, Germany, 3Thoraxklinik am Universitätsklinikum Heidelberg, Member of the DZL, Heidelberg, Germany, 4Hanover Medical School, Member of DZL, Hanover, Germany, 5Universitätsklinikum Leipzig AöR, Leipzig, Germany, 6Fachkrankenhaus Coswig, Coswig, Germany, 7LungenClinic Grosshansdorf, akademisches Lehrkrankenhaus Universität Schleswig-Holstein; Mitglied des Deutschen Zentrums für Lungenforschung, Grosshansdorf, Germany, 8Lungenfachklinik Immenhausen, pneumologische Lehrklinik Universität Göttingen, Immenhausen, Germany, 9Evangelische Lungenklink, Berlin-Buch, Germany, 10Boehringer Ingelheim, Ingelheim, Germany, 11Ludwig Maximilian University, and Asklepios Clinics Gauting, Member of the DZL, Munich, Germany
OBJECTIVES We aimed to assess the symptom burden and health related quality of life in patients with idiopathic lung fibrosis. METHODS Patients have been consecutively enrolled in an ongoing prospective non-interventional registry in Germany, investigating clinical characteristics, clinical management practices and quality of life. IPF diagnoses were in agreement with the international IPF guideline published in 2011. Clinical parameters and treatment practice were recorded by the physician. Patients filled out the EQ-5D-5L, St George's Respiratory Questionnaire (SGRQ), WHO-5 and the UCSD shortness of breath (SOB) scale. The time trade off (TTO) score was calculated for the EQ-5D. RESULTS To date (04 June 2014), 421 patients with IPF have been enrolled in the registry (mean age 68.6±9.5; 77% male). The mean six-minute walk distance was 271±200, mean % of predicted forced vital capacity was 72±20 and the mean % predicted DLCO was 35±16. Patients were treated with oral steroids (22.1%, as monotherapy in 7.1%); N-acetylcysteine (34.8%), pirfenidone (47.2%), and long-term O2 therapy (34.4%). The physician rated the disease in 35.6% as stable, in 31.1% as slowly progressing and in 11.9% as rapidly progressing. One in four patients described their current state of health as at least good, and every fifth as poor. The mean EQ-5D TTO score was 0.8±0.2. 45% of the patients showed depressive symptoms based on the WHO-5. The mean SGRQ sum score was 47.7±20.1 describing difficulties with breathing in the previous 3 months. Higher EQ-5D TTO scores were significantly associated with a lower number of comorbid diseases (r=-0.31), higher 6-minute walk distance (r=0.20), higher FVC % pred (r=0.27), less depression (r=0.66) and lower SGRQ scores (r=-0.72). CONCLUSIONS The IPF patients in this large registry had a more severe disease, a higher symptom burden and more compromised quality of life compared to recent randomised controlled trials.
Conference/Value in Health Info
2014-11, ISPOR Europe 2014, Amsterdam, The Netherlands
Value in Health, Vol. 17, No. 7 (November 2014)
Code
PRS70
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Respiratory-Related Disorders
Explore Related HEOR by Topic