Cystic Fibrosis Foundation is seeking input on issues relating to pain ans symptom management. Here is their announcement.
In preparation for the upcoming Palliative Care: Pain and Symptom Management Guidelines, sponsored by the CF Foundation and chaired by two researchers, one from the University of North Carolina and one from Emory University, a survey has been developed to help us better understand the pain and symptom management needs of individuals with CF. We are asking adults with CF, caregivers of individuals with CF, and CF care team members to respond to participate in this anonymous survey. The results of this research study will be used to help us develop guidelines to improve pain and symptom management for people with CF.
To help inform the scope of these guidelines and participate in this 10-15 minute survey, please click on the link below by Thursday, October 15th.
Please note that your identity will not be linked to your response as identifying information will not be collected during the survey. You will be asked about your experience with and practice patterns around pain and symptom management, and you may choose not to answer any or all questions. Completion of the survey implies your consent for participation in this research study.
Please contact email@example.com if you have any questions, and please feel free to share this opportunity with others in the CF community that might be interested by using the buttons found at the bottom of this email. Many thanks for your time and your contributions to the care of individuals with CF!
Elisabeth Dellon MD, MPH
Professor; Medical Director, Children’s Supportive Care Team; Director, UNC Cystic Fibrosis Center
Division of Pulmonology
Department of Pediatrics
University of North Carolina
Dio Kavalieratos, Ph.D.
Associate Professor & Director of Research and Quality
Division of Palliative Medicine
Department of Family and Preventive Medicine
Sarah Hempstead, MS
Practice Guidelines Manager
Cystic Fibrosis Foundation