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

Rajala, Kaisa; Lehto, Juho T.; Sutinen, Eva; Kautiainen, Hannu; Myllärniemi, Marjukka; Saarto, Tiina

doi:10.1186/s12890-018-0738-x

Cited by 48 publications

(46 citation statements)

References 57 publications

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“…7 Interstitial Lung Disease Unit, Royal Brompton Hospital, London, UK. 8 Boehringer Ingelheim International GmbH, Ingelheim am Rhein, Germany. 9 Boehringer Ingelheim GmbH & Co KG, Ingelheim am Rhein, Germany.…”

Section: Supplementary Informationmentioning

confidence: 99%

“…Registry studies reveal that a low forced vital capacity (FVC) % predicted (ie ≤ 50) is associated with severe symptoms and poor HRQoL, and a significant decline in FVC is associated with worsening symptoms and deterioration in HRQoL [4,7]. Furthermore, as patients with IPF approach acute exacerbation or death, they experience an escalating symptom burden and a rapid decline in HRQoL [5,8].…”

Section: Introductionmentioning

confidence: 99%

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Health-related quality of life and symptoms in patients with IPF treated with nintedanib: analyses of patient-reported outcomes from the INPULSIS® trials

et al. 2020

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Background: In the Phase III INPULSIS® trials, treatment of patients with idiopathic pulmonary fibrosis (IPF) with nintedanib significantly reduced the annual rate of decline in forced vital capacity (FVC) versus placebo, consistent with slowing disease progression. However, nintedanib was not associated with a benefit in health-related quality of life (HRQoL) assessed using the St George's respiratory questionnaire (SGRQ). We aimed to further examine the impact of IPF progression on HRQoL and symptoms, and to explore the effect of nintedanib on HRQoL in patients from the INPULSIS® trials stratified by clinical factors associated with disease progression. Methods: Patient-reported outcome (PRO) data from the INPULSIS® trials were included in three post hoc analyses. Two analyses used the pooled data set to examine PRO changes from baseline to week 52 according to 1) decline in FVC and 2) occurrence of acute exacerbations. In the third analysis, patients were stratified based on clinical indicators of disease progression (gender, age and physiology [GAP] stage; FVC % predicted; diffusing capacity of the lung for carbon monoxide [DL CO ] % predicted; composite physiologic index [CPI]; and SGRQ total score) at baseline; median change from baseline was measured at 52 weeks and treatment groups were compared using the Wilcoxon two-sample test. Results: Data from 1061 patients (638 nintedanib, 423 placebo) were analyzed. Greater categorical decline from baseline in FVC % predicted over 52 weeks was associated with significant worsening of HRQoL and symptoms across all PRO measures. Acute exacerbations were associated with deterioration in HRQoL and worsened symptoms. In general, patients with advanced disease at baseline (defined as GAP II/III, FVC ≤ 80%, DL CO ≤ 40%, CPI > 45, or SGRQ > 40) experienced greater deterioration in PROs than patients with less-advanced disease. Among patients with advanced disease, compared with placebo, nintedanib slowed deterioration in several PROs; benefit was most apparent on the SGRQ (total and activity scores). Conclusions: In patients with advanced IPF, compared with placebo, nintedanib slowed deterioration in HRQoL and symptoms as assessed by several PROs. HRQoL measures have a higher responsiveness to change in advanced disease and may lack sensitivity to capture change in patients with less-advanced IPF.

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Section: Supplementary Informationmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Health-related quality of life and symptoms in patients with IPF treated with nintedanib: analyses of patient-reported outcomes from the INPULSIS® trials

et al. 2020

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“…Previous studies have shown that a reduced capacity for exercise based on 6-minute walk test distance (24)(25)(26) or self-reported daily activity (27,28) are associated with increased mortality in patients with IPF. In a recent study of 92 patients in the prospective Finnish IPF registry, patients experienced a considerable deterioration in HRQL in the 2 years before death, particularly related to limitations in physical health and functioning (29).…”

Section: Discussionmentioning

confidence: 99%

Associations between Patient-reported Outcomes and Death or Lung Transplant in Idiopathic Pulmonary Fibrosis. Data from the Idiopathic Pulmonary Fibrosis Prospective Outcomes Registry

et al. 2020

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Rationale: Progression of idiopathic pulmonary fibrosis (IPF) is accompanied by worsening of symptoms, exercise capacity, and health-related quality of life. However, the utility of patient-reported outcomes as predictors of mortality remains uncertain. Objectives: To assess whether patient-reported outcomes are independently associated with mortality beyond clinical risk factors in patients with IPF. Methods: Data from the observational IPF Prospective Outcomes Registry were used to examine associations between patientreported outcomes at enrollment and the composite outcome of death or lung transplant in the following year. Associations were examined using univariable models and models adjusted for age and clinical variables that have been associated with death or lung transplant in patients with IPF in this cohort (oxygen use, forced vital capacity % predicted, and diffusing capacity of the lungs for carbon monoxide % predicted at enrollment). Results: Among 662 patients, 45 died and 12 underwent lung transplant over 1 year. In the model adjusted for age and clinical variables that were associated with death or lung transplant, worse scores on the St. George's Respiratory Questionnaire (SGRQ) total score (hazard ratio [HR], 1.22 [95% confidence interval (CI), 1.01-1.48] per 10-point increase), SGRQ activity score (HR, 1.25 [95% CI, 1.02-1.54] per 10-point increase) and SGRQ symptoms score (HR, 1.17 [95% CI, 1.01-1.36] per 10-point increase) were associated with death or lung transplant over 1 year. Conclusions: Patient-reported outcomes that assess symptoms and physical activity are independently associated with mortality in patients with IPF.

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“…Según diversos autores (25,26) , el requerir cuidado por un gran número de horas al día impacta en la dimensión psicológica y emocional de la persona con EC, pues el perder la independencia y la autonomía en la ejecución de las actividades básicas de la vida diaria genera en el paciente sentimientos de inutilidad, frustración, rechazo y enojo, entre otros, que pueden influir en la percepción de carga que se tiene. Además, también hay afectación en el contexto familiar y en la apreciación del paciente de sentirse como una carga, como consecuencia de las altas demandas de cuidados directos que ocasionan cambios en las dinámicas o roles familiares (27) .…”

Section: Discussionunclassified

Percepción De Carga De La Enfermedad en La Persona Con Enfermedad Crónica

2019

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RESUMENObjetivo: Describir el perfil y la Percepción de carga de la enfermedad en personas con enfermedad crónica e identificar correlaciones entre la Percepción de carga reportada y las variables sociodemográficas y de cuidado de la persona. Material y Método: Estudio cuantitativo, descriptivo correlacional de corte transversal realizado con una muestra de 240 personas con enfermedad crónica en tres instituciones de salud. Se midió la Percepción de carga de la enfermedad con el instrumento Carga de la Enfermedad Crónica para el Paciente GCPC-UN y las variables sociodemográficas de los participantes con una encuesta de caracterización. Para el análisis de los datos se usó estadística descriptiva y para identificar las correlaciones se usó el estadístico Rho de Spearman. Resultados: Sobre la Percepción de carga se encontró que hay mayor impacto de la enfermedad en el Disconfort físico del paciente, seguido del impacto en los Aspectos socioculturales y familiares y, finalmente, en el Sufrimiento emocional y espiritual. La Percepción de carga de la enfermedad se relacionó con la edad (r= -,173; p= 0,007), el tiempo con la enfermedad (r= -,182; p= 0,005) y el número de horas de cuidado diario (r= ,357; p= 0,000). Conclusión: Las personas con enfermedad crónica perciben carga por la enfermedad principalmente en lo relacionado con el Disconfort físico que esta genera. Existe una asociación entre la Percepción de carga de la enfermedad con variables sociodemográficas como la edad, el tiempo con la enfermedad y las horas de cuidado diario. En este caso los profesionales de la salud deben prestar atención a la atención integral de los pacientes con enfermedad crónica en todas sus dimensiones. ABSTRACTObjective: To describe the profile and Perception of cost of illness among people with chronic disease and to identify the correlations between the reported cost and the socio-demographic and care variables of the patient. Material and Method: A quantitative, cross-sectional, descriptive, correlational study conducted with a sample of 240 people with chronic disease in three healthcare institutions. The Cost of illness perception was measured using the instrument Chronic Disease Burden for the Patient GCPC-UN and a characterization survey for the socio-demographic variables of the participants. For the data analysis, descriptive statistics were used and the Spearman's Rho to identify correlations. Results: Regarding perception of cost, it was found that there is a greater impact on the disease in the Physical discomfort of the patient, followed by the impact on Sociocultural and family aspects and, finally, on Emotional and spiritual suffering. Cost of illness was related to age (r = -.173; p = 0.007), time with disease (r = -.182; p = 0.005) and the number of hours of daily care (r = .357; p = 0.000). Conclusion: People with chronic disease show Cost of illness mainly related to the Physical discomfort that it generates. There is a relationship between Cost of illness and socio-demographic variables such as age, time with di...

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

Cited by 48 publications

References 57 publications

Health-related quality of life and symptoms in patients with IPF treated with nintedanib: analyses of patient-reported outcomes from the INPULSIS® trials

Health-related quality of life and symptoms in patients with IPF treated with nintedanib: analyses of patient-reported outcomes from the INPULSIS® trials

Associations between Patient-reported Outcomes and Death or Lung Transplant in Idiopathic Pulmonary Fibrosis. Data from the Idiopathic Pulmonary Fibrosis Prospective Outcomes Registry

Percepción De Carga De La Enfermedad en La Persona Con Enfermedad Crónica

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