Pragmatic Implementation Trial of a CF Primary Palliative Care Intervention

NAActive, not recruitingINTERVENTIONAL
Enrollment

643

Participants

Timeline

Start Date

June 25, 2021

Primary Completion Date

June 30, 2024

Study Completion Date

June 30, 2024

Conditions
Cystic FibrosisQuality of Life
Interventions
OTHER

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."

Trial Locations (5)

10075

Northwell Health-Lenox Hill, New York

11040

Northwell Health, New York

11794

Stonybrook University, New York

30322

Emory University, Atlanta

02114

Massachusetts General Hospital, Boston

All Listed Sponsors
collaborator

MJHS Institute for Innovation in Palliative Care

OTHER

collaborator

Emory University

OTHER

collaborator

Stony Brook University

OTHER

collaborator

Feinstein Institute for Medical Research

OTHER

lead

Massachusetts General Hospital

OTHER

NCT04923880 - Pragmatic Implementation Trial of a CF Primary Palliative Care Intervention | Biotech Hunter | Biotech Hunter