Background IPF is a progressive fibrotic lung disease of unknown cause. Median survival for IPF patients is approximately three years from diagnosis. NICE guidance states that best supportive care should be offered from diagnosis to provide information, symptom relief and support withdrawal of therapies suspected to be ineffective or causing harm, and to provide end of life care (NICE, 2013). To this end, a hospice-based pulmonary fibrosis support group has been set up providing care for patients with IPF to improve access to palliative care support including consultant review. The anti-fibrotics nintedanib and pirfenidone (NICE, 2016; NICE, 2018) are recommended by NICE to slow the progression of the disease but have considerable side effects.
Aim This evaluation will collect data regarding the demographics of IPF patients seen, the source of referral and assess the proportion taking anti-fibrotics. The side effects experienced by patients will be described and obstacles in deprescribing anti-fibrotics outlined.
Methods A retrospective case note review will be performed to extract data from the narrative. This will be used to identify whether there are certain characteristics that these patients share in order to inform decisions regarding those who may be unable to tolerate anti-fibrotics in the future.
Result It is anticipated that many patients taking anti-fibrotics will experience significant side effects. There may be shared characteristics that enable us to predict which patients cannot tolerate these drugs that can have a significant and detrimental effect on quality of life of patients.
Conclusions The hospice has a highly evaluated IPF support group that provides professional and peer support to patients/families. It facilitates access to the Palliative Medicine Consultant who is able to support patients in discontinuing anti-fibrotic drugs that can adversely affect quality of life. The characteristics of patients who do not tolerate anti-fibrotics are outlined and obstacles in deprescibing described.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.