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Aug

Comment Period for Palliative Care Guidelines

A team sponsored by Cystic Fibrosis Foundation (CFF) has produced draft recommendations for models of best practices for palliative care in CF. Members of the CF community has the opportunity to provide feedback on the draft through August 30, 2019.

As pointed out in the draft, the concept of palliative care is commonly misunderstood. Rather than an end of life option, the draft guidelines establish a role for palliative care in CF treatment throughout life, starting with diagnosis. The scope of palliative care includes family and caregivers as well as those living with CF.

Here is the announcement from the CFF Community Voice team:

The CF Foundation would like your input on the draft of the Models of palliative care delivery for individuals with cystic fibrosis: Cystic Fibrosis Foundation evidence-informed guidelines. [NOTE: This link provides the option to read or download a PDF version of the draft guidelines.]

A committee of CF health care providers, two adults with CF, and a parent of an individual with CF researched and developed the consensus recommendation statements presented in the draft. It is our hope that you will add your input and feedback to ensure that our community issues actionable practice recommendations for palliative care delivery.

If you are interested in this opportunity, please review the Models of palliative care delivery for individuals with cystic fibrosis: Cystic Fibrosis Foundation evidence-informed guidelines.

Please read the instructions that are listed on the first page of the survey and submit your comments using the button below by Friday, August 30, 2019 at 5:00 p.m., ET. You will be able to provide feedback on each recommendation and have the opportunity to provide input on other sections as well.

Submit Comments

Thank you in advance for taking time to review and provide us with feedback on this important aspect of CF care. Feel free to share this opportunity with others in your network.

If you have any questions, please contact Sarah Hempstead at shempstead@cff.org.

Sincerely,
Albert Faro and Sarah Hempstead

Albert Faro, MD
Senior Director of Clinical Affairs
Cystic Fibrosis Foundation

Sarah Hempstead, MS
Practice Guidelines Manager
Cystic Fibrosis Foundation

Once these guidelines are adopted, they will influence the course of CF care. Therefore, we encourage you to review and comment on the draft.


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