Patients with interstitial lung disease (ILD) appear to appreciate the care and support they receive in a multidisciplinary clinic and especially as the severity of their disease increases.
An Australian study analysed 100 responses to an 18-item questionnaire sent to patients on the ILD registry at a Sydney multidisciplinary clinic.
The study found most respondents (86%) felt multidisciplinary care was important or very important to them.
In particular, multidisciplinary care was an opportunity to attain an accurate diagnosis, as well as education about their disease.
“Review by the expert respiratory physician and ILD specialist nurse was most valued, with 93% and 75% of respondents, respectively, rating them as important to very important,” the study said.
“Many comments highlighted the broad and important role of the specialist ILD nurse in the multidisciplinary clinic.”
For example: ‘[the ILD specialist nurses] have always chased drugs, returned calls, held my hand and walked me through everything … They are essential. I don’t know what I would do without them to contact.’
The study authors, led by Dr Anna McLean of the Respiratory Department, Royal Prince Alfred Hospital, Sydney, said simply attending the ILD clinic was an important or very important source of support for 84% of respondents.
“It was more important to those with a worse QOL based on K-BILD score,” the study noted.
“The support of the ILD specialist nurse and family and friends increased in importance in those with self-reported severe disease, as well as increased shortness of breath, based on the UCSD SOBQ.”
Access to restricted medications (76%) and clinical trials (77%) was also important to most patients.
The study, published in Respirology, is believed to be the first to review the function of an ILD multidisciplinary clinic from the patient’s perspective.
The authors said the fact that patients value the multidisciplinary approach was consistent with similar studies in other specialty areas such as oncology.
“Increasingly, international clinical guidelines, for example, the NICE guidelines, recommend that all patients with IPF should have access to an ILD specialist nurse and that any centre that wants specialist status should employ a specialist ILD nurse.”
“The results of our study support these recommendations, demonstrating that the ILD specialist nurse is highly valued by patients both for education and support. Furthermore, the perceived importance of the ILD specialist nurse is increased for patients with more severe disease.”
“Using a multidisciplinary approach to the management of ILD with additional focus on patient education, as well as tailoring care and resources to patient’s disease severity, represents a plausible pathway to improving the experience of patients with ILD,” they concluded.