Marked deterioration in the quality of life of patients with idiopathic pulmonary fibrosis during the last two years of life

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dc.contributor.author Rajala, K.
dc.contributor.author Lehto, J. T
dc.contributor.author Sutinen, E.
dc.contributor.author Kautiainen, H.
dc.contributor.author Myllärniemi, M.
dc.contributor.author Saarto, T.
dc.date.accessioned 2018-11-26T10:31:59Z
dc.date.available 2018-11-26T10:31:59Z
dc.date.issued 2018-11-20
dc.identifier.citation BMC Pulmonary Medicine. 2018 Nov 20;18(1):172
dc.identifier.uri http://hdl.handle.net/10138/266774
dc.description.abstract Abstract Background Idiopathic pulmonary fibrosis (IPF) is a chronic disease with a high symptom burden and poor survival that influences patients’ health-related quality of life (HRQOL). We aimed to evaluate IPF patients’ symptoms and HRQOL in a well-documented clinical cohort during their last two years of life. Methods In April 2015, we sent the Modified Medical Research Council Dyspnea Scale (MMRC), the modified Edmonton Symptom Assessment Scale (ESAS) and a self-rating HRQOL questionnaire (RAND-36) to 300 IPF patients, of which 247 (82%) responded. Thereafter, follow-up questionnaires were sent every six months for two years. Results Ninety-two patients died by August 2017. Among these patients, HRQOL was found to be considerably low already two years before death. The most prominent declines in HRQOL occurred in physical function, vitality, emotional role and social functioning (p < 0.001). The proportion of patients with MMRC scores ≥3 increased near death. Breathlessness and fatigue were the most severe symptoms. Symptom severity for the following symptoms increased significantly and reached the highest mean scores during the last six months of life (numeric rating scale/standard deviation): breathlessness (7.1/2.8), tiredness (7.0/2.3), dry mouth (6.0/3.0), cough (5.8/2.9), and pain with movement (5.0/3.5). Conclusions To our knowledge this is the first study demonstrating, that IPF patients experience remarkably low HRQOL already two years before death, especially regarding physical role. In addition, they suffer from severe breathlessness and fatigue. Furthermore, physical, social and emotional wellbeing deteriorate, and symptom burden increases near death. Regular symptom and HRQOL measurements are essential to assess palliative care needs in patients with IPF.
dc.publisher BioMed Central
dc.subject Idiopathic pulmonary fibrosis
dc.subject Palliative care
dc.subject Health related quality of life
dc.subject Symptoms
dc.title Marked deterioration in the quality of life of patients with idiopathic pulmonary fibrosis during the last two years of life
dc.date.updated 2018-11-26T10:31:59Z
dc.language.rfc3066 en
dc.rights.holder The Author(s).
dc.type.uri http://purl.org/eprint/entityType/ScholarlyWork
dc.type.uri http://purl.org/eprint/entityType/Expression
dc.type.uri http://purl.org/eprint/type/JournalArticle

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