Health‐related quality of life in idiopathic pulmonary fibrosis: Data from the <scp>A</scp>ustralian <scp>IPF R</scp>egistry

Glaspole, Ian; Chapman, Sally; Cooper, Wendy A.; Ellis, Samantha; Goh, Nicole; Hopkins, Peter; Macansh, Sacha; Mahar, Annabelle; Moodley, Yuben; Paul, Eldho; Reynolds, Paul N.; Walters, E. Haydn; Zappala, Christopher; Corte, Tamera J.

doi:10.1111/resp.12989

Cited by 97 publications

(103 citation statements)

References 25 publications

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“…Over time, progressive fibrosis of the lung parenchyma results in impaired lung function and a reduction in health-related quality of life [2, 3]. There is currently no curative pharmacological therapy for IPF; however, the approval of 2 anti-fibrotic drugs (nintedanib and pirfenidone) has provided renewed hope for patients with the disease.…”

Section: Introductionmentioning

confidence: 99%

Nintedanib in Idiopathic Pulmonary Fibrosis: Practical Management Recommendations for Potential Adverse Events

et al. 2018

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Idiopathic pulmonary fibrosis (IPF) is a fatal lung disease with a dismal survival rate of only 3 years and no curative pharmacological therapy. The recent approval of 2 anti-fibrotic drugs (nintedanib and pirfenidone) that slow disease progression has provided some hope for patients. However, effectively managing anti-fibrotic treatment can be a challenge due to tolerability issues, the presence of pulmonary and extra-pulmonary comorbidities, and the need for concomitant medications in many patients. In general, making clear evidence-based decisions can be difficult for physicians because patients with comorbidities are often excluded from clinical trials. Since currently anti-fibrotic drugs are the only effective therapeutics capable of slowing disease progression, it is imperative that all treatment options are thoroughly evaluated and exhausted in each individual, irrespective of complicating factors, to permit the best outcome for the patient. In this review, we present data from clinical trials, post hoc analyses, post-marketing surveillance, and real-world studies that are relevant to the management of nintedanib treatment. In addition, we also provide practical recommendations developed by a multidisciplinary panel of experts for the management of nintedanib treatment in patients with IPF associated complications and those experiencing gastrointestinal side effects.

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Section: Introductionmentioning

confidence: 99%

Nintedanib in Idiopathic Pulmonary Fibrosis: Practical Management Recommendations for Potential Adverse Events

et al. 2018

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“…IPF patients tend to be older and predominantly male. 8,10,11 Consistent with those characteristics, ischaemic heart disease is the most frequent cardiovascular co-morbidity observed among IPF patients, with a prevalence ranging up to 68%, 12 and rates of first time events such as myocardial infarction more than twice that of age-and gender-matched patients without a diagnosis of IPF. 13 Coincidently, for patients with ischaemic heart disease, the evidence in support of cardiac rehabilitation is compelling.…”

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confidence: 67%

“…7 As survival lengthens, quality of life is of increasing importance. In the present issue of Respirology, Glaspole et al 8 have published the first large population level analysis of health-related quality of life among IPF patients from the Australian IPF Registry. Data, including quality of life, dyspnoea, anxiety and depression, were collected from more than 500 patients every 6 months over approximately 2.5 years.…”

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confidence: 99%

“…The current findings from the Australian IPF Registry 8 can be used to inform practice and provide guidance for ongoing management of IPF directed at maintaining and improving respiratory function, dyspnoea and hence, quality of life. One of the strengths of the Australian Registry data is that they are obtained from a large and heterogeneous population, and so can be generalized to a greater extent than smaller, geographically limited study samples.…”

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confidence: 99%

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Maintaining quality of life in IPF patients: What role should pulmonary rehabilitation play?

Benton

Graham

2017

Respirology

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“…However, this study will prospectively collect data, providing valuable information regarding IPF management in Greece. It will also complement analogous registries from around the globe [26, 27, 39, 40], enforcing scientific attempts towards a global IPF registry that is anticipated to improve the medical treatment and outcome of IPF patients.…”

Section: Discussionmentioning

confidence: 99%

Design, Rationale, Methodology, and Aims of a Greek Prospective Idiopathic Pulmonary Fibrosis Registry: Investigating Idiopathic Pulmonary Fibrosis in Greece (INDULGE IPF)

et al. 2018

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Background: Idiopathic pulmonary fibrosis (IPF) is a chronic, fibrosing interstitial pneumonia of unknown origin. Despite the fact that the guidelines on the diagnosis and management of the disease were updated in 2015, incorporating novel agents recently introduced in the therapeutic approach of IPF, there is a lack of data on the epidemiology, disease status, and treatment in clinical practice. Contemporary data provided by national registries in IPF provide valuable information to guide clinical management of the disease in the real-world setting, adjusted to the local needs. Objective: Investigating Idiopathic Pulmonary Fibrosis in Greece (INDULGE IPF) is a Greek observational registry aiming at gaining further knowledge on the characteristics, management, progression, and outcomes of patients with IPF treated under real-world, clinical practice conditions in Greece. Methods: Approximately 300 patients will be enrolled consecutively in seven reference centers, constituting the largest IPF registry ever established in Greece. Conclusion: This registry is expected to provide data on the characteristics of IPF patients in Greece and the entire clinical management during the course of the disease.

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Health‐related quality of life in idiopathic pulmonary fibrosis: Data from the Australian IPF Registry

Abstract: Cough, dyspnoea and depression are major symptomatic determinants of HRQoL in IPF. FVC decline is associated with worsening HRQoL.

Cited by 97 publications

References 25 publications

Nintedanib in Idiopathic Pulmonary Fibrosis: Practical Management Recommendations for Potential Adverse Events

Nintedanib in Idiopathic Pulmonary Fibrosis: Practical Management Recommendations for Potential Adverse Events

Maintaining quality of life in IPF patients: What role should pulmonary rehabilitation play?

Design, Rationale, Methodology, and Aims of a Greek Prospective Idiopathic Pulmonary Fibrosis Registry: Investigating Idiopathic Pulmonary Fibrosis in Greece (INDULGE IPF)

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