IPF Patient Survey

In 2012, the first survey of idiopathic pulmonary fibrosis (IPF) patients in Canada, An Investigation into Patient Experiences with IPF showed a lack of information about IPF with both patients and their caregivers. Access to specialized care in IPF clinics and the availability of safe and effective treatment options was also not optimal.

  • 73% of respondents had never heard of IPF before the diagnostic process began
  • On average, patients wait almost 20 months from when they first begin to experience IPF symptoms to when they receive a confirmed diagnosis of IPF
  • Unfortunately only 32% of patients receive IPF as their first diagnosis
  • The diagnosis of IPF may be delayed five or more years from the time of onset
  • 32% of respondents reported receiving one diagnosis prior to IPF diagnosis
  • 15% of patients reported receiving three or more diagnosis prior to IPF diagnosis

 

IPF patients are dissatisfied with the efficacy of available IPF treatments, highlighting the need for new, more effective treatment options

  • 36% of IPF patients discontinued treatment because their doctor said it was no longer effective and 27 % of patients report they have never received treatment for their IPF
  • As indicated in the survey, 1/3 of patients who are not managed in IPF clinics by experts, report being dissatisfied with their level of care
  • Conversely, 2/3 of patients who are managed by experts in IPF clinics report being extremely satisfied
  • 59% of respondents would like to see more information available for people living with IPF
  • 73 Canadians living with IPF were surveyed about their clinical care and quality of life between March and July 2012
  • An Investigation into Patient Experiences with IPF, 2012 was conducted by Doxapharma

 

More About IPF

If you have questions about IPF, please talk to your doctor.

Please be aware that there is a lot of information about IPF available online, but many websites have information which may be inaccurate. If you are searching for information, we recommend that you only refer to reputable resources, such as the ones listed below: