KUALA LUMPUR, Dec 2 — Interstitial lung disease (ILD) is a serious group of lung conditions, but the rare respiratory illness remains unrecognised, contributing to delayed diagnosis and poor outcomes in Malaysia, say experts.
Dr Noorul Afidza Muhammad, a consultant respiratory physician at Sultan Idris Shah Serdang Hospital, said many ILD cases are underdiagnosed until late because ILD is uncommon and its symptoms mimic asthma, chronic obstructive pulmonary disease (COPD), or heart failure.
“Late referral to tertiary centres means late diagnosis, late treatment initiation, and poorer prognosis, including irreversible lung damage and higher mortality,” Dr Noorul Afidza told CodeBlue.
Dr Syazatul Syakirin Sirol Aflah, a consultant respiratory physician at the Institute of Respiratory Medicine (IPR) in Kuala Lumpur, noted that ILD is often not considered a major condition compared to asthma or COPD.
“By the time ILD is identified, fibrosis may have progressed and become irreversible. Patients often experience rapid deconditioning and may develop respiratory failure requiring oxygen support. Those with severe disease are also at risk of acute exacerbations associated with higher morbidity and mortality,” Dr Syazatul Syakirin told CodeBlue.
Dr Zuhanis Abdul Hamid, a clinical radiologist at Tawau Hospital in Sabah, said ILD can cause irreversible lung damage and may be progressive and fatal.
Occupational, Environmental Risk Factors
Dr Noorul Afidza drew attention to environmental and occupational hazards.
“Many ILDs are linked to air pollution and industrial exposures, including hypersensitivity pneumonitis, pneumoconioses (e.g., silicosis), and constrictive bronchiolitis. Including these factors broadens ILD’s relevance to overall lung health and prevention policy (workplace standards, surveillance, clean-air initiatives).”
Dr Syazatul Syakirin concurred, adding that many ILDs are associated with occupational or environmental exposures such as silica, asbestos, and farming-related antigens causing hypersensitivity pneumonitis.
“Air pollution and workplace exposures can also worsen disease progression and contribute to the overall disease burden. Recognising these links enhances public health relevance, supports prevention through workplace regulation and dust control, and helps identify high-risk individuals for targeted screening,” she said.
“Occupational health collaboration is essential, involving environmental agencies and industry stakeholders to strengthen prevention and compensation pathways. Occupational exposure history is routinely assessed in patients suspected of having ILD, and annual medical screening in high-risk industries offers an opportunity for earlier detection of cases.”
Overcoming Challenges In Diagnosis, Multidisciplinary Care
One of the greatest barriers to effective ILD treatment is timely and accurate diagnosis. According to Dr Noorul Afidza, chronic cough, exertional breathlessness, and ‘normal’ X-rays in early disease delay suspicion. Patients are often initially misdiagnosed with asthma or COPD, which can mask ILD’s progressive nature.
High-resolution computed tomography (HRCT), the gold standard diagnostic tool, remains insufficiently accessible.
“HRCT is the diagnostic cornerstone, but availability and timely scheduling vary by region; expert interpretation is also uneven. This delays pattern recognition, MDT (multi-disciplinary team) consensus, and treatment start,” she warned. “Each month of delay can mean lost lung function that is rarely recoverable.”
Dr Syazatul Syakirin similarly said access to HRCT thorax is limited, as scanners are heavily used for other urgent indications such as cancer staging and respiratory infections. “ILD cases are rarely prioritised as urgent.”
“In Malaysia, constraints in equipment availability, service hours, and specialist reporting further contribute to delays,” she added.
Since HRCT is essential to identify ILD patterns and guide diagnosis, biopsy decisions, and treatment planning through multidisciplinary discussions, “these delays significantly slow the overall diagnostic and treatment process.”
Dr Zuhanis highlighted the lack of diagnostic facilities as the main problem with ILD in Malaysia, besides a shortage of trained thoracic radiologists to make accurate imaging diagnosis.
Affordability for lab investigations of diseases that may cause ILD, as well as imaging examinations, is another hurdle as these are quite pricey, she added.
There are also considerable gaps in multidisciplinary care for ILD.
“Limited numbers of respiratory physicians with ILD training and thoracic radiologists experienced in HRCT interpretation. Variable access to laboratory tests (e.g., autoimmune panels, biomarkers and genetic testing) and biopsy. Turnaround and funding also remain as barriers,” said Dr Noorul Afidza.
“There is also patchy access to pulmonary rehabilitation, dietetic support, palliative care, and other disciplines (cardiology, rheumatology), no referral pathway from primary care and secondary hospitals to ILD centres and multidisciplinary team meetings outside major hubs.”
Dr Syazatul Syakirin shared the sentiment.
“Access to formal multidisciplinary discussions (MDD) remains limited, although accurate diagnosis requires input from respiratory physicians, thoracic radiologists, thoracic pathologists, and rheumatologists,” she said. “Many hospitals do not routinely conduct MDD or lack the necessary specialist team.”
Dr Syazatul Syakirin also highlighted unequal access to advanced diagnostics like HRCT thorax, cryobiopsy, pulmonary rehabilitation, and oxygen therapy, that are mostly available only in tertiary centres, leaving peripheral hospitals with limited resources and referral pathways.
“Care pathways also remain fragmented, with no standardised national approach for referral, staging, monitoring, or funding of antifibrotic therapy, leading to inconsistent patient management,” she opined.
Dr Zuhanis explained that multidisciplinary care gaps for ILD are caused by diagnostic difficulties, either human, machine, and/or knowledge, besides limitation to treatment access, absence of a local database for research, and lack of awareness.
The Way Forward
Dr Noorul Afidza offered clear steps to improve early diagnosis and care integration for ILD:
- Targeted education for primary care and medical officers on ILD “red flags” (persistent dry cough, bibasal crackles/velcro, exertional desaturation, non-responsive “asthma/COPD”).
- A simple national referral pathway from Klinik Kesihatan/secondary hospitals to ILD clinics.
- Fast-track HRCT slots for suspected ILD and access to thoracic radiology reporting (including tele-radiology).
- Regular virtual ILD boards linking district hospitals to tertiary ILD centres.
- Wider access to spirometry to trigger timely referrals.
Dr Syazatul Syakirin said improving ILD care required strengthening early detection and access to specialist evaluation. Primary care education with simple symptom recognition tools and red-flag referral criteria can support earlier suspicion.
“The Lung Health Initiative, which uses chest X-ray AI, offers an opportunity to identify early ILD changes, while the growing use of thoracic imaging for lung and cardiac screening may help detect ILD incidentally,” she suggested.
“Expanding hub-and-spoke imaging networks, tele-reporting, and virtual multidisciplinary discussions can improve diagnostic accuracy, especially in the peripheral hospitals. Standardised national referral pathways, targeted screening of high-risk groups.
“Public awareness and policy support, including funding for HRCT and antifibrotic therapy, are key to improving equitable access and outcomes.”
To enable early diagnosis of ILD, Dr Zuhanis recommended raising awareness across the country among everyone – the general public, health care workers, and government stakeholders.
“Train clinicians, radiologists, pathologists, and health care workers on the signs of ILD, diagnostic character, and complications. More seamless pathway of referral from the primary to quaternary health care level, and increase diagnostic facilities,” she said.
All three experts – Dr Zuhanis, Dr Syazatul Syakirin, and Dr Noorul Afidza – called for a national ILD register to study the prevalence and burden of ILD in Malaysia, though they noted potential barriers due to costs.
“A national registry would quantify true burden, geographic gaps, and outcomes; improve early detection, standardise care, and support research and trials; and inform policy and funding decisions (e.g., medicine access, rehab expansion),” said Dr Noorul Afidza.
Dr Syazatul Syakirin stressed the importance of an ILD register to understand the epidemiology, risk factors, and disease subtypes in Malaysia that may differ from other nations, due to Malaysia’s multiethnic population and varied geographical background.
“However, challenges include the cost of setting up and maintaining a proper registry, manpower limitations, and issues related to data sharing and ownership between MOH (Ministry of Health) and MOE (Ministry of Education) institutions.”
Dr Zuhanis said infrastructure for a national ILD register should be able to be planned with the best support systems throughout the country.
