About Our CF Palliative Care Project
The current project will develop a primary palliative care intervention for cystic fibrosis (CF) Care Teams through an innovative and sustained collaboration among Massachusetts General Hospital (MGH), the MJHS Institute for Innovation in Palliative Care, and a consortium of four different CF Centers.
Through this collaboration, CF Care Teams will create and have access to effective screening and care provision workflows, best practice guides for common problems among individuals with CF, a multifaceted educational program focused on best practices in palliative care, and a quality improvement toolkit. This effort will establish the infrastructure and support necessary for multiple CF Centers to implement a primary palliative care model to serve individuals with CF and their family caregivers.
MJHS Institute for Innovation in Palliative Care
The MJHS Institute for Innovation in Palliative Care was established in 2014 by the New York-based, not-for-profit Metropolitan Jewish Health System. Closely aligned with a large clinical organization, MJHS Hospice and Palliative Care, the MJHS Institute’s mission is to advance specialist palliative care through professional education and research.
Its multidisciplinary faculty oversees interprofessional on-site training programs and a robust online education resource. The Institute’s research is focused on health services research, clinical trials, population health studies using large administrative datasets, and surveys of populations with serious chronic illness.
Massachusetts General Hospital
Massachusetts General Hospital (MGH) is a teaching hospital, a founding member of Partners HealthCare, Inc., and an affiliate of Harvard Medical School. Founded in 1811, MGH is a premier research and clinical institution, including the internationally recognized MGH Cystic Fibrosis Center, a combined pediatric and adult cystic fibrosis (CF) program serving nearly 250 individuals with CF.
Care at MGH’s CF Center focuses on both physical and mental health promotion for individuals with CF and their caregivers. The Center’s multidisciplinary team of clinical researchers has developed and disseminated innovations in best practices to improve the quality of mental health care for CF worldwide.
Improving Life with CF
A Palliative Care Partnership
Massachusetts General Hospital is partnering with the MJHS Institute for Innovation in Palliative Care and a consortium of four CF Centers (Emory University, Mount Sinai Beth Israel, Northwell Health, and Stony Brook Health) on the CF Primary Palliative Care Project.
This project will create and test a new approach for primary palliative care. Palliative care is an approach to the care of individuals with chronic illnesses that aims to prevent and manage all sources of distress and burden experienced by patients and their families.
During a 12-month development phase, the project will:
- Seek input from individuals with CF and their caregivers, as well as from experts in the field
- Develop the resources needed by CF Centers to implement primary palliative care, including education, best practice guides, and a quality improvement toolkit
- Help each of the CF Centers plan for implementation of the new palliative care program next year
Webinars
Online courses offering education related to delivering primary palliative care, with continuing medical education and/or continuing education (CME/CE) credits for a range of health care professionals.
Best Practice Treatment Guides
Best practice guides for CF Care Teams to manage common CF symptoms and other concerns.
Train-the-Trainer Manual
A resource for CF Care Teams containing key messages and information related to providing high-quality primary palliative care that will accompany an in-person training for CF clinicians.
Quality Improvement Toolkit
A toolkit for CF Care Teams, containing suggested patient and caregiver education, information about quality indicators that may be used to track intervention-related processes and outcomes, and practical information about specific focused studies that sites may use to improve outcomes.
Patient and Caregiver Educational Materials
Educational resources for individuals with CF and their families.
Improving Life with CF
A Palliative Care Partnership
Anna Georgiopoulos, MD
Consulting Psychiatrist, Cystic Fibrosis Program
Massachusetts General Hospital
Dr. Anna Georgiopoulos is a psychiatrist and researcher with expertise in attention-deficit/hyperactivity disorder, depression, and anxiety among individuals with chronic illness. One of Dr. Georgiopoulos’s specialties lies in working with adults and youth with cystic fibrosis.Learn more
Lara Dhingra, PhD
Director of Health Disparities and Outcomes Research
MJHS Institute for Innovation in Palliative Care
Dr. Lara Dhingra is a clinical psychologist with expertise in multidisciplinary palliative care and health services research. Her research focuses on innovative models of palliative care for individuals with chronic illness and their caregivers. Learn more
