Home monitoring of interstitial lung disease – early signals, faster action
Interstitial lung disease (ILD) is one of the most serious complications of systemic rheumatic diseases. Often, clear symptoms are not experienced until significant lung damage has occurred. Now, research is underway to see if home-based digital monitoring can help detect and treat the disease earlier.
For some, the disease progresses slowly and steadily, for others rapidly and unpredictably. This is precisely why it is crucial to detect the complication early and to follow the patient closely.
The research project, mILDer-RMD, is led by Anna-Maria Hoffmann-Vold, consultant and professor of rheumatology at Oslo University Hospital, partner in REMEDY.
– We aim for more targeted treatment, fewer unnecessary hospital visits, increased patient management and better utilization of specialist resources, she says.
What is ILD – and why is close follow-up important?
ILD involves inflammation and scarring (fibrosis) of the lung tissue. This makes the lungs stiffer and reduces their ability to take in oxygen. Typical symptoms may include increasing shortness of breath with activity, a dry cough, and decreased endurance, but many patients have few or no symptoms in the early stages.
Once fibrosis is established, the damage is largely irreversible. Therefore, the timing of diagnosis and treatment decisions is critical. Traditional hospital follow-up with check-ups every three to six months may be too coarse-grained for a disease that in some cases progresses rapidly. The need for more continuous insight into the disease progression is the rationale for mILDer-RMD.
From clinical questions to research projects
Throughout her career, Hoffmann-Vold
She was born and raised in Berlin, where she studied medicine. In 2001, she began her clinical career in internal medicine at Larvik Hospital, before starting a specialization in rheumatology at Rikshospitalet/Oslo University Hospital.
In 2014, she completed a PhD in rheumatology, followed by two postdoctoral positions, including in the Belperio laboratory at UCLA in the USA. The intersection of rheumatology, immunology and pulmonary medicine has provided experiences that have been central to the development of her later research projects.
“ILD is a field with large knowledge gaps, especially when it comes to predicting who will progress and when,” says Hoffmann-Vold. That is precisely why it also has great potential for improvement.
For her, it has been crucial that the research is based on concrete clinical challenges. The development of digital, home-based solutions for follow-up stems directly from the need to detect deterioration earlier, before functional loss becomes permanent.
How home-based follow-up works in mILDer-RMD
In mILDer-RMD, patients are followed at home through a structured and technologically supported program. Every two weeks, patients measure lung function using a Bluetooth-connected spirometer. In addition, they complete a one-minute standing and sitting test at home. There, they measure oxygen saturation, record temperature, take blood samples and report symptoms via specific questionnaires.
All data is sent to a digital platform, Zeen, which the researchers have developed and adapted for the study. The platform enables algorithm-based monitoring. In the event of deviations, clinical follow-up at Rikshospitalet is triggered. The goal is to detect changes early – preferably before the patient notices them themselves.
Broad recruitment and close follow-up
The study has chosen a broad recruitment strategy. Patients are identified through established registries and through routine clinical follow-up. Of 120 eligible patients, 90 are included.
The study is closely linked to a dedicated study team. Rheumatology specialist and doctoral student Emily Langballe and study nurse Mona-Lovise Talaro Ramsli have played key roles in ensuring practical feasibility and good patient follow-up. Both are affiliated with the Department of Rheumatology at Oslo University Hospital.
Safety also for the seriously ill
To ensure that follow-up at home is safe, even for patients with serious illnesses, great emphasis is placed on training and user-friendliness. Patients receive thorough training in the hospital before they start. CE-marked, user-friendly measuring devices are used.
Researchers can digitally monitor whether registrations are being carried out and alarm limits are individually adjusted. In case of signs of deterioration, patients can be quickly contacted for clinical assessment. This provides increased security for patients and caregivers, compared to more sporadic checks.
Possible consequences for clinical practice
If the project shows that home-based follow-up is safe and contributes to earlier detection of ILD progression than traditional hospital follow-up, this could have significant clinical and organizational consequences.
In the long term, this may form the basis for new follow-up routines in the health service, where the control intervals are more closely adapted to the individual patient's risk and disease development.
REMEDY as a professional framework and the way forward
For Hoffmann-Vold, REMEDY has been an important professional and strategic framework.
– The center provides methodological support, access to new partners and a clear anchoring for clinically relevant research in Norway, she says.
Together with Eirik Ikdahl, she is now leading work package 4 in REMEDY, on comorbidity and organ manifestations in rheumatic diseases. This is closely aligned with her core interests.
Once the mILDer-RMD study is completed, she sees great opportunities to take the results further into clinical practice and develop new projects based on the experiences.
A look 5–10 years into the future
By detecting deterioration earlier, follow-up can be better tailored to the individual patient. This can provide a safer and more predictable everyday life for patients, while at the same time allowing the health service to use resources more purposefully in the follow-up of serious lung disease.
– The ambition is that home-based follow-up will become part of the usual treatment for selected patients with ILD and rheumatic disease.
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What are systemic rheumatic diseases?
Systemic rheumatic diseases are autoimmune diseases in which the immune system attacks the body's own tissues. Unlike rheumatic diseases that mainly affect the joints, systemic diseases can affect multiple organs in the body.
Common organs that can be affected are joints, skin, blood vessels, lungs, heart and kidneys. This can cause both local symptoms and more serious organ manifestations, such as interstitial lung disease (ILD).
Examples of systemic rheumatic diseases are systemic sclerosis (scleroderma), systemic lupus erythematosus (SLE), myositis, and Sjögren's syndrome.
The course of the disease varies widely, from mild and stable symptoms to rapid and severe disease progression that requires close follow-up and treatment.
Systemic rheumatic diseases cannot be cured, but they can be treated to reduce inflammation, relieve symptoms, and prevent organ damage. Treatment is tailored to the individual patient, based on which organs are affected and how active the disease is.
The mainstay of treatment is drugs that suppress the immune system.
