scholarly journals The living with pulmonary fibrosis questionnaire in progressive fibrosing interstitial lung disease

2021 ◽  
pp. 00145-2020
Author(s):  
Jeffrey Swigris ◽  
Katelyn Cutts ◽  
Natalia Male ◽  
Michael Baldwin ◽  
Klaus. B. Rohr ◽  
...  
Keyword(s):  
Interstitial Lung Disease ◽  
Pulmonary Fibrosis ◽  
Lung Disease ◽  
Qualitative Content Analysis ◽  
Well Being ◽  
Related Quality ◽  
Health Related ◽  
The Usa ◽  
Almost All

The Living with Idiopathic Pulmonary Fibrosis (L-IPF) questionnaire was developed with substantial input from patients with IPF to assess symptoms and health-related quality of life (HRQoL). Because IPF is the prototypical chronic fibrosing interstitial lung disease (ILD) with a progressive phenotype, we expanded applicability of the L-IPF by deleting the word “idiopathic”, creating the L-PF (Living with Pulmonary Fibrosis) questionnaire, and then assessed its relevance among patients with progressive fibrosing ILDs in one-to-one interviews.Patients in the USA and Germany with any progressive fibrosing ILD other than IPF were asked about their disease and symptoms, completed the 44-item L-PF questionnaire (comprising two modules that assess symptoms and impacts of disease) and then answered a series of debriefing questions. Interviews were recorded, transcribed and coded for qualitative content analysis.Twenty patients were interviewed, but time constraints meant not all were asked about all items. The most frequent diagnoses were rheumatoid arthritis-associated ILD (25%) and mixed connective tissue disease-associated ILD (20%). Almost all patients endorsed the symptoms assessed by the L-PF: shortness of breath (19/20), cough (19/20 patients) and fatigue (18/20). Most patients endorsed impacts of progressive fibrosing ILD on activities of daily living, physical well-being, sleep, emotional well-being, and social aspects of their lives. Most patients had an overall positive impression of the Symptoms module and understood items as intended. All seven patients asked understood the items of the Impacts module.The L-PF contains concepts relevant and important to patients with progressive fibrosing ILD, and items are understood as intended.

scholarly journals Determinants of Health-Related Quality of Life Decline in Interstitial Lung Disease

2020 ◽  
Author(s):  
Phillen Nozibuyiso Maqhuzu ◽  
Boglárka Lilla Szentes ◽  
Michael Kreuter ◽  
Thomas Bahmer ◽  
Nicolas Kahn ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Interstitial Lung Disease ◽  
Lung Disease ◽  
Psychological Impact ◽  
Sociodemographic Factors ◽  
Health Related Quality ◽  
Lower Baseline ◽  
Related Quality ◽  
Health Related

Abstract Background: Health-related quality of life (HRQL) in interstitial lung disease (ILD) patients is impaired. We aimed to identify baseline predictors for HRQL decline within a 12-month observation period. Methods: We analyzed 194 ILD patients from two German ILD-centers in the observational HILDA study. We employed the disease-specific King’s Brief Interstitial Lung Disease questionnaire (K-BILD) with the subdomains ‘psychological impact’, ‘chest symptoms’ and ‘breathlessness and activities’, and the generic EQ-5D Visual Analog Scale (VAS). We evaluated how many patients experienced a clinically meaningful decline in HRQL. Subsequently, we investigated medical and sociodemographic factors as potential predictors of HRQL deterioration. Results: Within the study population (34.0% male, Ø age 61.7) mean HRQL scores hardly changed between baseline and follow up (K-BILD: 52.8 vs. 52.5 | VAS: 60.0 vs. 57.3). On the intra-individual level, 30.4% (n = 59) experienced a clinically relevant deterioration in K-BILD total score and 35.4% (n = 68) in VAS. Lower baseline forced vital capacity % predicted determined HRQL decline in K-BILD total score (ß– coefficient -0.02, p = 0.007), VAS (ß–coefficient -0.03, p < 0.0001), and in the subdomain ‘psychological impact’ (ß– coefficient -0.02, p = 0.014). Lower baseline diffusing capacity of carbon monoxide % predicted determined deterioration in ‘breathlessness and activities’ (ß– coefficient -0.04, p = 0.003) and ‘chest symptoms’ (ß– coefficient -0.04, p = 0.002). Additionally, increasing age predicted decline in ‘psychological impact’ (ß–coefficient 0.06, p < 0.007). Conclusion: A third of ILD patients experience a clinically relevant HRQL deterioration within 12 months, which is mainly predicted by lung function baseline value.

scholarly journals PRS62 PREDICTORS OF HEALTH-RELATED QUALITY OF LIFE DECLINE IN INTERSTITIAL LUNG DISEASE USING THE K-BILD QUESTIONNAIRE

2020 ◽  
Vol 23 ◽  
pp. S360
Author(s):  
P.N. Maqhuzu ◽  
B. Szentes ◽  
M. Kreuter ◽  
T. Bahmer ◽  
N.C. Kahn ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Interstitial Lung Disease ◽  
Lung Disease ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals Determinants of health-related quality of life decline in interstitial lung disease

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Phillen Nozibuyiso Maqhuzu ◽  
Boglarka L. Szentes ◽  
Michael Kreuter ◽  
Thomas Bahmer ◽  
Nicolas Kahn ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Interstitial Lung Disease ◽  
Lung Function ◽  
Lung Disease ◽  
Psychological Impact ◽  
Health Related Quality ◽  
Lower Baseline ◽  
Related Quality ◽  
Health Related

Abstract Background Health-related quality of life (HRQL) in interstitial lung disease (ILD) patients is impaired. We aimed to identify baseline predictors for HRQL decline within a 12-month observation period. Methods We analyzed 194 ILD patients from two German ILD-centers in the observational HILDA study. We employed the disease-specific King’s Brief Interstitial Lung Disease questionnaire (K-BILD) with the subdomains ‘psychological impact’, ‘chest symptoms’ and ‘breathlessness and activities’, and the generic EQ-5D Visual Analog Scale (VAS). We evaluated how many patients experienced a clinically meaningful decline in HRQL. Subsequently, we investigated medical and sociodemographic factors as potential predictors of HRQL deterioration. Results Within the study population (34.0% male, Ø age 61.7) mean HRQL scores hardly changed between baseline and follow up (K-BILD: 52.8 vs. 52.5 | VAS: 60.0 vs. 57.3). On the intra-individual level, 30.4% (n = 59) experienced a clinically relevant deterioration in K-BILD total score and 35.4% (n = 68) in VAS. Lower baseline forced vital capacity (FVC) % predicted determined HRQL decline in K-BILD total score (ß-coefficient: − 0.02, p = 0.007), VAS (ß-coefficient: − 0.03, p < 0.0001), and in the subdomain ‘psychological impact’ (ß-coefficient: − 0.02, p = 0.014). Lower baseline diffusing capacity of carbon monoxide (DLCO) % predicted determined deterioration in ‘breathlessness and activities’ (ß-coefficient: − 0.04, p = 0.003) and ‘chest symptoms’ (ß-coefficient: − 0.04, p = 0.002). Additionally, increasing age predicted decline in ‘psychological impact’ (ß-coefficient: 0.06, p < 0.007). Conclusion Around a third of ILD patients experienced a clinically relevant HRQL deterioration in a 12-month period, which was associated with baseline lung function values in all K-BILD domains. As lung function values are time-dependent variables with possible improvements, in contrast to age and ILD subtype, it, thus, seems important to improve lung function and prevent its decline in order to maintain HRQL on the possibly highest level.

scholarly journals Relationship Between Lung Function Impairment and Health-Related Quality of Life in COPD and Interstitial Lung Disease

CHEST Journal ◽  
2012 ◽  
Vol 142 (3) ◽  
pp. 704-711 ◽  
Author(s):  
Cristine E. Berry ◽  
M. Bradley Drummond ◽  
MeiLan K. Han ◽  
Daner Li ◽  
Cathy Fuller ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Interstitial Lung Disease ◽  
Lung Function ◽  
Lung Disease ◽  
Health Related Quality ◽  
Function Impairment ◽  
Related Quality ◽  
Health Related ◽  
Lung Function Impairment

scholarly journals Determinants of health-related quality of life decline in interstitial lung disease

2020 ◽  
Author(s):  
Phillen Nozibuyiso Maqhuzu ◽  
Boglárka Lilla Szentes ◽  
Michael Kreuter ◽  
Thomas Bahmer ◽  
Nicolas Kahn ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Interstitial Lung Disease ◽  
Lung Function ◽  
Lung Disease ◽  
Psychological Impact ◽  
Health Related Quality ◽  
Lower Baseline ◽  
Related Quality ◽  
Health Related

Abstract Background: Health-related quality of life (HRQL) in interstitial lung disease (ILD) patients is impaired. We aimed to identify baseline predictors for HRQL decline within a 12-month observation period. Methods: We analyzed 194 ILD patients from two German ILD-centers in the observational HILDA study. We employed the disease-specific King’s Brief Interstitial Lung Disease questionnaire (K-BILD) with the subdomains ‘psychological impact’, ‘chest symptoms’ and ‘breathlessness and activities’, and the generic EQ-5D Visual Analog Scale (VAS). We evaluated how many patients experienced a clinically meaningful decline in HRQL. Subsequently, we investigated medical and sociodemographic factors as potential predictors of HRQL deterioration. Results: Within the study population (34.0% male, Ø age 61.7) mean HRQL scores hardly changed between baseline and follow up (K-BILD: 52.8 vs. 52.5 | VAS: 60.0 vs. 57.3). On the intra-individual level, 30.4% (n = 59) experienced a clinically relevant deterioration in K-BILD total score and 35.4% (n = 68) in VAS. Lower baseline forced vital capacity % predicted determined HRQL decline in K-BILD total score (ß– coefficient -0.02, p = 0.007), VAS (ß–coefficient -0.03, p < 0.0001), and in the subdomain ‘psychological impact’ (ß– coefficient -0.02, p = 0.014). Lower baseline diffusing capacity of carbon monoxide % predicted determined deterioration in ‘breathlessness and activities’ (ß– coefficient -0.04, p = 0.003) and ‘chest symptoms’ (ß– coefficient -0.04, p = 0.002). Additionally, increasing age predicted decline in ‘psychological impact’ (ß–coefficient 0.06, p < 0.007). Conclusion: Around a third of ILD patients experienced a clinically relevant HRQL deterioration in a 12-month period, which is consistently associated with baseline lung function values. As lung function values are time-dependent variables with possible improvements, it, thus, seems important to diagnose ILD early in order to maintain HRQL on the possibly highest level.

Sleep disorders and health-related quality of life in patients with interstitial lung disease

2017 ◽  
Vol 22 (2) ◽  
pp. 393-400 ◽  
Author(s):  
Maria Mavroudi ◽  
Despoina Papakosta ◽  
Theodore Kontakiotis ◽  
Kaliopi Domvri ◽  
George Kalamaras ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Interstitial Lung Disease ◽  
Lung Disease ◽  
Sleep Disorders ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals Effects of Systemic Enzyme Supplements on Symptoms and Quality of Life in Patients with Pulmonary Fibrosis—A Pilot Study

Medicines ◽  
2021 ◽  
Vol 8 (11) ◽  
pp. 68
Author(s):  
Neha Shah
Keyword(s):  
Quality Of Life ◽  
Pulmonary Fibrosis ◽  
Well Being ◽  
Proof Of Concept ◽  
Open Label ◽  
End Of Treatment ◽  
Related Quality ◽  
Health Related ◽  
Baseline Values

Current FDA-approved antifibrotic treatments for Idiopathic Pulmonary Fibrosis slow down disease progression but have little impact on symptoms or quality of life in patients. This study was conducted to evaluate the effects of systemic enzymes in relieving symptoms associated with PF and improving quality of life. Methods: an open-label, prospective study on subjects with a confirmed diagnosis of PF was conducted as proof-of-concept. The subjects (n = 13) received the oral systemic enzyme supplements Serracor-NK and Serra Rx for 12 weeks and completed Health-Related Quality of Life (HRQL) questionnaires. The effect of this regimen was examined by comparing the end-of-treatment questionnaire scores with baseline values. Results: significant improvement was seen in 61.5% of subjects, as assessed by the WHO well-being index; an improvement in scores was seen in 84.6% of the subjects, as assessed by the UCSD Shortness of Breath Questionnaire, with 38.4% of the subjects showing minimal clinically important difference; the supplementation was found to be efficacious in 69.2%, 84.6%, 69.2% and 61.5% of the subjects, as assessed by the Saint George’s Respiratory Questionnaire total, symptom, activity, and impact scores, respectively. Conclusions: Serracor-NK and Serra Rx improve symptoms, as well as mental and physical wellbeing and HRQL in patients with PF.

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