A cross-sectional evaluation of the idiopathic pulmonary fibrosis patient satisfaction and quality of life with a care coordinator

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.

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mMRC dyspnoea scale indicates impaired quality of life and increased pain in patients with idiopathic pulmonary fibrosis

ERJ Open Research ◽

10.1183/23120541.00084-2017 ◽

2017 ◽

Vol 3 (4) ◽

pp. 00084-2017 ◽

Cited By ~ 10

Author(s):

Kaisa Rajala ◽

Juho T. Lehto ◽

Eva Sutinen ◽

Hannu Kautiainen ◽

Marjukka Myllärniemi ◽

...

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Idiopathic Pulmonary Fibrosis ◽

Pulmonary Fibrosis ◽

Linear Relationship ◽

Real Life ◽

Symptom Burden ◽

Cross Sectional ◽

Edmonton Symptom Assessment Scale

This study was undertaken to investigate idiopathic pulmonary fibrosis (IPF) patients' health-related quality of life (HRQoL) and symptoms in a real-life cross-sectional study. Our secondary aim was to create a simple identification method for patients with increased need for palliative care by studying the relationship between modified Medical Research Council (mMRC) dyspnoea scale, HRQoL and symptoms.We sent a self-rating HRQoL questionnaire (RAND-36) and modified Edmonton Symptom Assessment Scale (ESAS) to 300 IPF patients; 84% of the patients responded to these questionnaires.The most prevalent (>80%) symptoms were tiredness, breathlessness, cough and pain in movement. An increasing mMRC score showed a linear relationship (p<0.001) to impaired HRQoL in all dimensions of RAND-36 and the severity of all symptoms in ESAS. Dimensions of RAND-36 fell below general population reference values in patients with mMRC score ≥2. The intensity of pain in movement (p<0.001) and at rest (p=0.041), and the prevalence of chest pain (p<0.001) had a positive linear relationship to increased mMRC score.An increasing mMRC score reflects impaired HRQoL and a high symptom burden. In clinical practice, the mMRC scale could be used for screening and identification of IPF patients with increased need for palliative care.

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Health-related Quality of Life in Patients with Idiopathic Pulmonary Fibrosis -Cross-sectional and Longitudinal Study-

Internal Medicine ◽

10.2169/internalmedicine.46.6218 ◽

2007 ◽

Vol 46 (18) ◽

pp. 1533-1542 ◽

Cited By ~ 33

Author(s):

Hiromi Tomioka ◽

Kazufumi Imanaka ◽

Kimio Hashimoto ◽

Hironobu Iwasaki

Keyword(s):

Quality Of Life ◽

Longitudinal Study ◽

Idiopathic Pulmonary Fibrosis ◽

Pulmonary Fibrosis ◽

Health Related Quality ◽

Cross Sectional ◽

Related Quality ◽

Health Related

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Tele-Rehabilitation Program in Idiopathic Pulmonary Fibrosis—A Single-Center Randomized Trial

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph181910016 ◽

2021 ◽

Vol 18 (19) ◽

pp. 10016

Author(s):

Jose Cerdán-de-las-Heras ◽

Fernanda Balbino ◽

Anders Løkke ◽

Daniel Catalán-Matamoros ◽

Ole Hilberg ◽

...

Keyword(s):

Quality Of Life ◽

Patient Satisfaction ◽

Interstitial Lung Disease ◽

Idiopathic Pulmonary Fibrosis ◽

Pulmonary Fibrosis ◽

Lung Disease ◽

Exercise Capacity ◽

Control Group

We investigated the usefulness and effectiveness of tele-rehabilitation on exercise capacity in patients with idiopathic pulmonary fibrosis (IPF). A randomized study was carried out, including stable patients with IPF for 3 months of tele-rehabilitation: video and chat consultations with a physiotherapist and workout sessions with a virtual physiotherapist agent (VAPA). Moreover, 6-minute walk test distance (6MWTD), forced vital capacity (FVC), diffusion capacity for carbon monoxide (DLCO), 7 days pedometry, Saint George Respiratory Questionnaire for interstitial lung disease, The King's Brief Interstitial Lung Disease Questionnaire, and General Anxiety Disorder 7 Questionnaire were tested before and after 3 months of tele-rehabilitation, as well as after 3 and 6 months follow-up. Patient satisfaction and adherence were also measured for tele-rehabilitation with VAPA. Twenty-nine patients aged 70.9 ± 8.6 years, male 72.4%, FVC% 83.5 ± 17.7, DLCO% 50.6 ± 13.0, 6MWTD 468.4 ± 14.8 were included. Fifteen patients were randomized to tele-rehabilitation with VAPA and 14 to the control group. Differences in 6MWTD between groups were at baseline (+10 m (p = 0.11)) and after 3 (+39.5m (p = 0.03)), 6 (+ 34.3m (p = 0.02)), and 9 months (+ 40.5m (p = 0.15)) follow-up. No difference was observed in pedometry and quality of life. Adherence was above 63%. Patient satisfaction was high. Tele-rehabilitation with VAPA appears to be useful in patients with IPF. Exercise capacity was better at follow up at 3 and 6 months compared with the control group. There was no change in quality of life or pedometry. Adherence and patient satisfaction were all high.

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Palliative Care and Quality of Life in Idiopathic Pulmonary Fibrosis

Case Medical Research ◽

10.31525/ct1-nct03981406 ◽

2019 ◽

Author(s):

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Idiopathic Pulmonary Fibrosis ◽

Pulmonary Fibrosis

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Health and Quality of Life Assessment Project for Caregivers of Idiopathic Pulmonary Fibrosis Patients

Case Medical Research ◽

10.31525/ct1-nct04031690 ◽

2019 ◽

Author(s):

Keyword(s):

Quality Of Life ◽

Idiopathic Pulmonary Fibrosis ◽

Pulmonary Fibrosis ◽

Life Assessment ◽

Quality Of Life Assessment

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Downregulation of exosomal let-7d and miR-16 in idiopathic pulmonary fibrosis

BMC Pulmonary Medicine ◽

10.1186/s12890-021-01550-2 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Donato Lacedonia ◽

Giulia Scioscia ◽

Piera Soccio ◽

Massimo Conese ◽

Lucia Catucci ◽

...

Keyword(s):

Idiopathic Pulmonary Fibrosis ◽

Pulmonary Fibrosis ◽

Therapy Response ◽

Down Regulation ◽

Cross Sectional ◽

Exosomal Mirnas ◽

Different Types ◽

Sectional Analysis ◽

Made In

Abstract Background Idiopathic Pulmonary Fibrosis (IPF) is a degenerative interstitial lung disease with both a poor prognosis and quality of life once the diagnosis is made. In the last decade many features of the disease have been investigated to better understand the pathological steps that lead to the onset of the disease and, moreover, different types of biomarkers have been tested to find valid diagnostic, prognostic and therapy response predictive ones. In the complexity of IPF, microRNA (miRNAs) biomarker investigation seems to be promising. Methods We analysed the expression of five exosomal miRNAs supposed to have a role in the pathogenesis of the disease from serum of a group of IPF patients (n = 61) and we compared it with the expression of the same miRNAs in a group of healthy controls (n = 15). Results In the current study what emerged is let-7d down-regulation and, unexpectedly, miR-16 significant down-regulation. Moreover, through a cross-sectional analysis, a clustering of the expression of miR-16, miR-21 and miR-26a was found. Conclusions These findings could help the individuation of previously unknown key players in the pathophysiology of IPF and, most interestingly, more specific targets for the development of effective medications.

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