Daily home monitoring in Idiopathic Pulmonary Fibrosis * a pilot study to assess feasibility of a home spirometry and eHealth self-management application

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 aim to determine the feasibility of a home monitoring program,
consisting of an online tool (IPF-online), home spirometry and online
collecting of PROs in patients with IPF.

This is a prospective, single-centre, non-randomized pilot study

Patients will be asked to fill in questionnaires, perform home spirometry and
they will have one additional outpatient clinic visit with lung function
measurement. There will be no risk and the burden is small. Participants may
directly benefit from this study, because patients receive extra information
about the disease and have the possibility to communicate with their health
care professional at a low threshold. IPF online may promote disease
self-management, which may help the patient to feel more in control.