'We hope to make the lives of ILD-patients a little more comfortable'

Katleen Leceuvre and Dominique Decubber work as nurse consultants in a care programme for interstitial lung disease (ILD) at the University Hospital of Leuven. As ILD nurse consultants, they are the primary point of contact for ILD-patients. It's their mission to provide as much information as needed to patients and to guide them through the disease. Katleen: 'I hope to be a bright spot in the darkness.'

Listening

When a Belgian ILD-patient visits the outpatient clinic of the University Hospital of Leuven, they have a big chance of meeting Katleen or Dominique. 'We cooperate closely with the doctors', says Dominique. 'Sometimes one of us sees the patient first and then the doctor, sometimes it's the other way around.' The main focus of the ILD nurse consultants is education and information. 'We are the point of contact and point of support for the patient', says Katleen. 'The doctor doesn't always have time to repeat information about medication, for instance. But you notice that information often needs to be repeated a few times. Patients regularly contact us by phone or email with questions about their disease. Most of the time it's about the side effects of medication, shortness of breath, cough and fatigue. But we also questions about end of life care.'

Dominique adds: 'We make sure that patients stick to their treatment regime, so their lung capacity stays as optimal as possible. Especially during the first three months it's difficult for patient to adhere to their medication, because that's when they experience the most side-effects. We help them to get through that period, so they don't stop the medication.' Apart from providing information and education, a big part of the job is also listening, according to Dominique: 'It's very important to listen carefully to patients and to evaluate their quality of life. We also try to stimulate patients to stay as physically active as possible, because this improves their psychological wellbeing. It's all about keeping the quality of life as high as possible.'

ILD consists of two hundred different diseases, which makes it interesting

Appeal

ILD might not be the first specialism you would think about to work in. But for both Katleen and Dominique, ILD does have a special appeal. 'Especially IPF is a chronic and life threatening disease', says Katleen. 'With such a disease, you can really make a difference for patients. I also like working in the outpatient clinic. I can see the patients there, check how things are going and whether there are any problems. It also gives me an opportunity to talk about socio-psychological problems with patients, or about any other area in which the patient might need support.' For Dominique, the appeal of working with ILD also lies in the fact that it's a scientifically interesting disease. 'ILD consists of two hundred different diseases, which makes it interesting', says Dominique. 'Working in this field also gives me a chance to absorb myself into a specific form of lung disease.'

Despite the appeal of working as an ILD nurse consultant, the job isn't always easy. 'ILD can sometimes also be a tough specialism to work in', says Katleen. 'People's condition can get worse and they can die. But I like to be an aid to these people that have a rough road ahead. I hope to be a bright spot in the darkness. As a small part of a bigger system around the patient, I hope to make the lives of the patients a little more comfortable and bearable.'

Awareness

Both Katleen and Dominique realise it's important to be a point of contact for the patients, especially because ILD is still a rare disease. 'We need to make sure patients can count on us', says Dominique, 'also because general practitioners (GP) don't have a lot of experience with ILD. They often only see one or two patients during their entire career as a GP, while we, as a centre of expertise, attend to around 300 ILD-patients.'

Because there is still a lack of knowledge around ILD, the nurses point to the fact that more awareness would be a good thing. 'We also try to contribute to this awareness', says Dominique, 'for example by organizing a special day around ILD once a year, together with the patient organization. We get a lot of response from the general public on such a day, so that's a sign there is a need for such awareness. This is very important, because more awareness could lead to a faster diagnosis of ILD, which is crucial for the prevention of scarring in the lungs. With an earlier diagnosis, we can preserve as much healthy lung tissue as possible.'