Idiopathic Pulmonary Fibrosis Clinical Trial
Official title:
Home Monitoring in Idiopathic Pulmonary Fibrosis; Improving Use of Anti-fibrotic Medication and Quality of Life
In this study it will be investigate whether a home monitoring program improves disease-specific health-related quality of life (HRQOL) for patients with idiopathic pulmonary fibrosis (IPF) through appropriate medication use and subsequently results in better objective and subjective outcomes.
IPF is a chronic disease with progressive scarring of the lung tissue (fibrosis), resulting
in a poor prognosis and a devastating impact on the lives of patients and their families.
Progressive shortness of breath, cough and fatigue are major factors influencing
health-related quality of life (HRQOL) in patients with IPF. Recently two anti-fibrotic drugs
became available that slow down disease progression. The availability of effective drugs for
this devastating disease has importantly changed daily care and research in IPF. Currently,
one of the major challenges in daily IPF care is the evaluation of how individual patients
objectively and subjectively experience treatment and benefit from treatment. The use of
information communication technology in health care, also named e-health, is a promising
solution to improve the quality of care. E-health allows remote exchange of data between
patients and health care professionals which enables monitoring, research and management of
long term conditions. Also communication between patients and physicians, and physicians
mutually, becomes more accessible. This creates an opportunity for earlier intervention by
health care professionals, which may prevent a hospital admission. This might improve quality
of life and reduce costs. Patients easily get access to up-to-date and tailored information,
in an interactive way. By providing these tools, patients may better understand their health
conditions and become actively involved in management of their own health care, which may
lead to a better health status. An 'internet tool' for patients with IPF have been developed,
providing information and enabling them to keep track of their own symptoms, HRQOL scores,
medication use and lung function results.
In this study it will be investigated whether a home monitoring program improves
disease-specific HRQOL for IPF patients through appropriate medication use and subsequently
results in better objective and subjective outcomes.
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