Access to specialist and multidisciplinary healthcare for pulmonary fibrosis (PF) is poor in Ireland, a new study has found.

PF refers to a number of fibrotic respiratory disorders. It is characterised by progressive breathlessness, cough and fatigue. The most prevalent form – idiopathic PF – is estimated to affect around 1,000 people in Ireland. The median survival from time of diagnosis is just 4.5 years.

Researchers from the Irish Lung Fibrosis Association, Invisio Ltd, the Mater Hospital and St Vincent’s University Hospital set out to gain an understanding of patients’ access to specialist and multidisciplinary PF services.

Some 112 patients participated in a quantitative survey either online or by telephone. Ninety-nine currently had PF and 13 were post-transplant for PF. Almost three-quarters (70%) of the respondents were aged between 61 and 80 and among those with current PF, 46% had been diagnosed between two and five years ago.

The study found that just 58% of the respondents had access to a clinical nurse specialist. Among those with current PF, access varied greatly depending on the location, with access ranging from 37% for patients located in Leinster (excluding Dublin) to 80% for patients in Connacht.

When it came to the percentage of patients who had ever been referred to a specified healthcare service or support in relation to their PF, just 38% had been referred to a physiotherapist and 25% to a dietitian. Meanwhile, just 6% had been referred to a clinical psychologist and 3% to a speech therapist.

Some 45% had never been referred to any specified healthcare service or support for their PF.

The number of patients who felt such services or supports would be beneficial to them were significantly higher. For example, while just 6% had been referred to a clinical psychologist, 67% felt this would be beneficial.

The researchers said that while the data suggests poor provision of PF care across all services, “the lack of specialist nursing is one of particular concern” as these are “critical to the delivery of patient-centred care”.

They also noted that when referrals were made, care was of high quality. However, the timeliness of these referrals was a concern. Most patients were referred more than 12 months after their PF diagnosis, “a considerable delay for a rapidly progressive disease”.

The researchers said that these findings show that access to specialist and multidisciplinary healthcare for PF “is poor and reveals significant unmet needs across all services”.

They called for a national approach to the provision of specialist nurses and suggested that improved recognition of patients’ needs, earlier referral and better patient education may improve healthcare access.

The study was published in the Irish Medical Journal.