scholarly journals Gaps in care of patients living with pulmonary fibrosis: a joint patient and expert statement on the results of a Europe-wide survey

2019 ◽  
Vol 5 (4) ◽  
pp. 00124-2019 ◽  
Author(s):  
Catharina C. Moor ◽  
Marlies S. Wijsenbeek ◽  
Elisabetta Balestro ◽  
Davide Biondini ◽  
Benjamin Bondue ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Unmet Needs ◽  
Care Pathway ◽  
Patient Journey ◽  
Timely Access ◽  
Information Trial ◽  
Delays In Diagnosis

IntroductionPulmonary fibrosis (PF) and its most common form, idiopathic pulmonary fibrosis (IPF), are chronic, progressive diseases resulting in increasing loss of lung function and impaired quality of life and survival. The aim of this joint expert and patient statement was to highlight the most pressing common unmet needs of patients with PF/IPF, putting forward recommendations to improve the quality of life and health outcomes throughout the patient journey.MethodsTwo online surveys for patients and healthcare professionals (HCPs) were conducted by the European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF) in 14 European countries.ResultsThe surveys were answered by 286 patients and 69 HCPs, including physicians and nurses. Delays in diagnosis and timely access to interstitial lung disease specialists and pharmacological treatment have been identified as important gaps in care. Additionally, patients and HCPs reported that a greater focus on symptom-centred management, adequate information, trial information and increasing awareness of PF/IPF is required.ConclusionsThe surveys offer important insights into the current unmet needs of PF/IPF patients. Interventions at different points of the care pathway are needed to improve patient experience.

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

2018 ◽  
Vol 18 (1) ◽  
Author(s):  
K. Rajala ◽  
J. T. Lehto ◽  
E. Sutinen ◽  
H. Kautiainen ◽  
M. Myllärniemi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis

Impact of Pulmonary Rehabilitation on Exercise Tolerance and Quality of Life in Patients With Idiopathic Pulmonary Fibrosis

2018 ◽  
Vol 38 (5) ◽  
pp. 273-278 ◽  
Author(s):  
Mansueto Gomes-Neto ◽  
Cassio Magalhães Silva ◽  
Diego Ezequiel ◽  
Cristiano Sena Conceição ◽  
Micheli Saquetto ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Pulmonary Rehabilitation ◽  
Exercise Tolerance

A Tool to Assess Quality of Life in Idiopathic Pulmonary Fibrosis

2010 ◽  
Author(s):  
Jeffrey J. Swigris ◽  
Sandra R. Wilson ◽  
Kathy E. Green ◽  
David B. Sprunger ◽  
Kevin K. Brown ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Assess Quality

scholarly journals Gender differences at presentation of idiopathic pulmonary fibrosis in Sweden

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Dimitrios Kalafatis ◽  
Jing Gao ◽  
Ida Pesonen ◽  
Lisa Carlson ◽  
C. Magnus Sköld ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Gender Differences ◽  
Lung Function ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Poor Quality ◽  
Smoking History ◽  
Cross Sectional

Abstract Background Idiopathic pulmonary fibrosis (IPF) is a disease with poor prognosis mainly affecting males. Differences in clinical presentation between genders may be important both for the diagnostic work-up and for follow-up. In the present study, we therefore explored potential gender differences at presentation in a Swedish cohort of IPF-patients. Methods We studied patients included in the Swedish IPF- registry over a three-year period from its launch in 2014. A cross-sectional analysis was performed for data concerning demographics, lung function, 6- min walking test (6MWT) and quality of life (QoL) (King’s Brief Interstitial Lung Disease (K-BILD) score). Results Three hundred forty- eight patients (250 (72%) males, 98 (28%) females, median age 72 years in both genders) were included in the registry during the study period. Smoking history (N = 169 (68%) vs. N = 53 (54%), p < 0.05), baseline lung function (Forced vital capacity, % of predicted (FVC%): 68.9% ± 14.4 vs. 73.0% ± 17.7, p < 0.05; Total lung capacity, % of predicted (TLC%): 62.2% ± 11.8 vs. 68.6% ± 11.3%, p < 0.001) were significantly different at presentation between males and females, respectively. Comorbidities such as coronary artery disease (OR: 3.5–95% CI: 1.6–7.6) and other cardiovascular diseases (including atrial fibrillation and heart failure) (OR: 3.8–95% CI: 1.9–7.8) also showed significant differences between the genders. The K- BILD showed poor quality of life, but no difference was found between genders in total score (54 ± 11 vs. 54 ± 10, p = 0.61 in males vs. females, respectively). Conclusions This study shows that female patients with IPF have a more preserved lung function than males at inclusion, while males have a significant burden of cardiovascular comorbidities. However, QoL and results on the 6MWT did not differ between the groups. These gender differences may be of importance both at diagnosis and follow- up of patients with IPF.

Burden of idiopathic pulmonary fibrosis on patients’ emotional well being and quality of life: a literature review

2020 ◽  
Vol 26 (5) ◽  
pp. 457-463 ◽  
Author(s):  
Katerina Antoniou ◽  
Apostolos Kamekis ◽  
Emmanouil K. Symvoulakis ◽  
Maria Kokosi ◽  
Jeffrey J. Swigris
Keyword(s):  
Quality Of Life ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Literature Review ◽  
Well Being
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