New report reveals major Improvements in lives of people with cystic fibrosis

A new report has highlighted major improvements in the quality and the length of lives of people with cystic fibrosis over the last two decades (1998-2017).

At the core of the Report ‘Independent Living and Cystic Fibrosis’ are two surveys undertaken by CFI in 1998 and 2017. Around one quarter of the adult CF population in Ireland participated in both surveys.

Corroborative data was also drawn from other sources such as the Cystic Fibrosis Registry of Ireland.

Amongst the key points noted in the report are:

• In 1998 adults with CF were not expected to be in any employment. In 2017, a remarkable 54% of those surveyed were in full-time or part-time work.
• In 1998, 74% of respondents lived with their parents in their parents’ house. By 2017 this figure had reduced to 43%.
• In 1998 adults with CF were not expected to have children of their own. In 2017, 26% of the adult CF population aged 21 or over surveyed had children.
• In 1998 only 8% of those surveyed were married, compared with 26% in 2017.
• The percentage of those obtaining third-level qualifications has increased from 38% in 1998 to 49% in 2017.
• The median age of death in Ireland was only 17 years of age in 1998. By 2015 this had increased to 30 years for the first time.

Philip Watt, Chief Executive, Cystic Fibrosis Ireland, said: “The findings are in many ways remarkable and send out a strong message of hope.

“The main message is that adults with CF are living much more fulfilled and independent lives in 2017 compared with 1998. They are much more likely to have a job, have better educational attainment, to have their own home and to even have a family of their own.

“The improvements in length and quality of life are closely linked to improvement in services such as dedicated CF hospital centres which we have fought for; improved rates of double lung transplantation and, more recently, access to new ground-breaking drugs such as Kalydeco and Orkambi.

“The report shows that with sustained investment over a number of years people with a chronic and fatal disease such as CF can lead longer and better lives.

“However key gaps remain. The Government promised a dedicated cystic fibrosis in-patient unit in Beaumont Hospital commencing in 2017. There has been no progress on this commitment in the Programme for Government and understaffing in major CF centres remains an issue.”