643
Participants
Start Date
June 25, 2021
Primary Completion Date
June 30, 2024
Study Completion Date
June 30, 2024
Implementation of Primary Palliative Care Intervention in CF Centers
"Individuals with CF ages 12 years and above will complete an annual palliative care needs assessment with the CF care team using the IPOS (Integrated Palliative Care Outcome Scale).~Individuals with CF under 12 years of age will complete an annual palliative care needs assessment with the CF care team using IPOS as a conversation guide.~Caregivers of Individuals with CF of all ages will be offered the BASC (Brief Assessment Scale for Caregivers).~In addition to annual needs assessment, palliative care needs assessment will take place when triggered by changes in disease status, such as hospitalization, new diagnosis of CF related Diabetes or referral to transplant."
Northwell Health-Lenox Hill, New York
Northwell Health, New York
Stonybrook University, New York
Emory University, Atlanta
Massachusetts General Hospital, Boston
Collaborators (1)
MJHS Institute for Innovation in Palliative Care
OTHER
Emory University
OTHER
Stony Brook University
OTHER
Feinstein Institute for Medical Research
OTHER
Massachusetts General Hospital
OTHER