Patients with IPF suffer from exceptionally low HRQOL together with severe breathlessness and fatigue already two years before death. In addition, physical and emotional wellbeing further deteriorates near death concurrently with escalating overall symptom burden. In clinical practice, structured measurements of HRQOL and symptoms are necessary to guide high-quality early-integrated palliative care and end-of-life planning in IPF patients.
COPD: Chronic obstructive pulmonary disease; EOL: End-of-life; ESAS: Modified Edmonton Symptom Assessment Scale; FVC: Forced vital capacity; HRQOL: Health-related quality of life; IPF: Idiopathic pulmonary fibrosis; IQR: Interquartile range; MMRC: Modified Medical Research Council Dyspnea Scale; NRS: Numeric rating scale; RAND-36: RAND 36-Item Health Survey; SD: Standard deviation; SGRQ: St Georges Respiratory Questionnaire
We are grateful for the patients that consented in participating this study. The authors express gratitude to the participants of the FinnishIPF consortium: Kaarteenaho R, Saarelainen S, Kankaanranta H, Böök A, Salomaa ER, Kaunisto J, Hodgson U and Purokivi M. The authors are also immensely grateful to the numerous pulmonary physicians, who have contributed to the study by including patients and asking for informed consents: Vaden J, Pekonen M, Tapanainen H, Lajunen H, Saarinen A, Suuronen U, Lammi L, Lehtonen K, Männistö J, Salmi I, Torkko M, Torkko P, Erkkilä M, Andersen H, Jaakkola J, Rinne H, Alho M-L, Pietiläinen M, Toljamo T, Palomäki M, Nylund E, Ahonen E, Impola P, Saviaro S, Pusa L, Vilkman S, Ekroos H, Vuori P Hedman J, Lahti M and Mursu A.
The Academy of Finland, Sigrid Jusélius Foundation, Foundation of the Finnish Anti-Tuberculosis Association, Governmental subsidy for health sciences research have supported Lung Factor research group. Kaisa Rajala has received grants mentioned on conflicts of interest.
Availability of data and materials
Our dataset set is not publicly available due to the relatively small Finnish IPF population we could not guarantee individuals anonymity.
Ethics approval and consent to participate
The Finnish National Institute for Health and Welfare (Dnro THL/1161/5.05.01/2012) approved the screening of hospital registries for patients with IPF. Helsinki University Central Hospital ethics committee approved this study (381/13/03/01/2014). All participating patients gave their written informed consent to participate to this specific study.
Consent for publication
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BMC Pulm Med. 2018;18(172) © 2018 BioMed Central, Ltd.