Home monitoring in Idiopathic Pulmonary Fibrosis; improving use of anti-fibrotic medication and quality of life

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. We have developed an *internet tool* for
patients with IPF, providing information and enabling them to keep track of
their own symptoms, HRQOL scores, medication use and lung function results.

In this study we will investigate 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.

This is a prospective randomized clinical multi-centre study.

The intervention of this study consists of a home monitoring program added to
standard care. Control group will receive standard care alone.
The home monitoring program consists of 1) the use of a previously developed
interactive internet tool to coach patients and enhance self-management 2)
home-based pulmonary function testing with a handheld spirometer and 3)
recording of patient reported outcomes (PROs).

Patients will be asked to use the home monitoring program, fill in
questionnaires and perform home spirometry. There will be no risk and the
burden is acceptable. Participants in the intervention group may directly
benefit from this study, because the comprehensive home monitoring program
promotes disease self-management and offers extra information and advices about
the disease, medication and side-effects. This may help patients to feel more
in control and improve their quality of life.