Patients with interstitial lung disease managed outside specialist centres lack access to clinical trials and psychological support, an Australian study has found.

Researchers from Monash University and Alfred Health surveyed 42 respiratory physicians working in non-ILD centres across all Australian states and territories to identify barriers to optimal care delivery.

The study revealed significant gaps in service access, with 66% of respondents reporting no access to specialist ILD nurses within their institutions and 32% lacking referral pathways to psychological support.

Clinical trial participation was particularly limited, with only 13% of physicians having considered teletrials for their patients and 18% reporting no access to clinical trials at all, they reported in Repiratory Medicine and Research[link here].

Despite these challenges, 88% of respondents reported referring patients to multidisciplinary meetings for diagnosis, with 67% attending virtual meetings. However, only 62% had referred patients to an ILD clinic in the past 12 months.

Authors Dr Gabriella Tikellis and Professor Anne Holland said the lack of access to tertiary centres and absence of referral pathways were the predominant barriers preventing optimal care.

The study found that whilst most ILD-related services were available within institutions, access to advanced care planning, clinical trials, psychological support, pulmonary rehabilitation and smoking cessation programmes showed “greater dependency” on external referrals compared to metropolitan specialist centres.

Genetic testing was available to 69% of respondents, though testing was “available only outside their institution for 66%”. Testing was generally offered to patients with early onset ILD, familial cases, or suspected telomere disorders.

Physicians identified potential facilitators including defined referral pathways, increased MDM access, satellite clinics in regional areas, and greater telehealth utilisation.

The authors concluded that “access to specialist ILD care is variable for patients managed outside of centres with a dedicated ILD service given the lack of access and poorly defined referral pathways”.

They emphasised that “the challenge now is to establish a network of ILD expertise and care that will provide more comprehensive and accessible care to all patients and healthcare professionals”.

The study was funded by the NHMRC Centre of Research Excellence for Interstitial Lung Disease and received ethics approval from Monash University.