About Our CF Palliative Care Project
Pragmatic Implementation Trial of a CF Primary Palliative Care Intervention (aka, the Improving Life with CF study)
The current project has developed a primary palliative care intervention for CF care teams through an innovative and sustained collaboration among MGH, the MJHS Institute, and a consortium of four different CF Centers. Through this collaboration, CF care teams have created 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. These efforts have established 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. Currently, implementation of the model is occurring in the five CF Centers and preliminary outcomes are being evaluated to determine the model’s uptake in the sites and impact on illness burden in people living with CF and their 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.
Pragmatic Implementation Trial of a CF Primary Palliative Care Intervention (aka, the Improving Life with CF study)
The current project has developed a primary palliative care intervention for CF care teams through an innovative and sustained collaboration among MGH, the MJHS Institute, and a consortium of four different CF Centers. Through this collaboration, CF care teams have created 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. These efforts have established 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. Currently, implementation of the model is occurring in the five CF Centers and preliminary outcomes are being evaluated to determine the model’s uptake in the sites and impact on illness burden in people living with CF and their caregivers.
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 (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 Primary 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, Northwell Health, Lennox Hill Hospital, and Stony Brook Health) on the Improving Life with CF study.
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. Our goals are to increase the ability of the CF care teams to manage problems identified through routine palliative care needs assessments, and to improve clinical skills through educational programming and quality improvement.
During a 12-month development phase, the project accomplished the following:
- Sought input from individuals with CF and their caregivers through semi-structured interviews, as well feedback from experts in the field, to inform the selection of top priority areas and model components,
- Developed the resources needed by CF Centers to implement primary palliative care, including patient/family and provider education, best practice treatment guides, and a quality improvement toolkit, and
- Helped each of the CF Centers plan for implementation of the new palliative care program.
In the next 18 months of implementation, the project is:
- Implementing routine annual and “triggered” screenings of individuals with CF and their caregivers, followed by appropriate triage by a care team members(s) based on a prompt assessment,
- Offering state-of-the-art provider education, including Best Practice Treatment Guides for managing common problems, expert CME/CE webinars, and a Train-the-Trainer approach to on-site skills development in palliative care,
- Creating a Quality Improvement toolkit to support implementation,
- Conducting baseline and outcome assessments in individuals with CF and their caregivers, along with providers, to evaluate the impact of the intervention, and
- Conducting focus groups with providers from each of the CF Centers to identify perceptions about the intervention and factors that impact its implementation.
Webinars
Earn FREE CME/CE Credits
Online courses offering education related to delivering primary palliative care, with Continuing Medical Education and/or Continuing Education (CME/CE) credits.
Best Practice Treatment Guides & Clinical Interview Guides
Download FREE PDFs
Best practice guides for CF care teams to manage common CF symptoms and engage individuals with CF and their caregivers in effective serious illness conversations. ADAPT-CF guide to assess unmet needs in children under 12.
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.
Patient and Caregiver Educational Materials
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
Trial Description & Design
Palliative care is an interdisciplinary model of care intended to mitigate the suffering and illness burden experienced by patients with serious illnesses, and their families, from the time of diagnosis forward. The illness burden experienced by patients with cystic fibrosis (CF) and their caregivers is characterized by problems in many domains (e.g., physical symptoms, emotional distress, caregiver burden, and need for goal-setting).
Interventions to address the goals of palliative care must be undertaken throughout the course of the illness by CF professionals—an approach known as generalist-level or primary palliative care. At present, there are no standardized, generalizable models of primary palliative care for CF.
We describe the development of a novel primary palliative care intervention for patients with CF created by five CF Centers, key stakeholders, and a palliative care institute dedicated to interprofessional education.
Implement a primary palliative care intervention comprising screening-and-triage workflows, best practice treatment guides for high frequency problems, patient/family and provider education, and a quality improvement (QI) toolkit.
Subaim 1
Evaluate Center-level data on feasibility, uptake, and intervention-related acceptability and satisfaction as measured by: 1) Center-level rates of screening and treatment delivery and 2) acceptability and satisfaction as indicated by patient-, provider- and system-level facilitators and barriers, including cost, and 3) quantitative and qualitative reports from individuals with CF, caregivers, and CF Care Team members.
Subaim 2
Evaluate individual-level data on preliminary outcomes for individuals with CF by comparing ratings on patient- and caregiver-reported outcome measures (e.g., Integrated Palliative Care Outcome Scale, Cystic Fibrosis Questionnaire-Revised, Memorial Symptom Assessment Scale-Cystic Fibrosis, and Brief Assessment Scale for Caregivers) during the trial to baseline ratings and exploring covariates of change (age, race/ethnicity, gender, disease severity, CFTR modifier treatment, psychological distress, and varied indicators reflecting intervention implementation).
Improving Life with CF
A Primary 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, Northwell Health, Lennox Hill Hospital, and Stony Brook Health) on the Improving Life with CF study.
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. Our goals are to increase the ability of the CF care teams to manage problems identified through routine palliative care needs assessments, and to improve clinical skills through educational programming and quality improvement.
During a 12-month development phase, the project accomplished the following:
- Sought input from individuals with CF and their caregivers through semi-structured interviews, as well feedback from experts in the field, to inform the selection of top priority areas and model components,
- Developed the resources needed by CF Centers to implement primary palliative care, including patient/family and provider education, best practice treatment guides, and a quality improvement toolkit, and
- Helped each of the CF Centers plan for implementation of the new palliative care program.
In the next 18 months of implementation, the project is:
- Implementing routine annual and “triggered” screenings of individuals with CF and their caregivers, followed by appropriate triage by a care team members(s) based on a prompt assessment,
- Offering state-of-the-art provider education, including Best Practice Treatment Guides for managing common problems, expert CME/CE webinars, and a Train-the-Trainer approach to on-site skills development in palliative care,
- Creating a Quality Improvement toolkit to support implementation,
- Conducting baseline and outcome assessments in individuals with CF and their caregivers, along with providers, to evaluate the impact of the intervention, and
- Conducting focus groups with providers from each of the CF Centers to identify perceptions about the intervention and factors that impact its implementation.
Webinars
Earn FREE CME/CE Credits
Online courses offering education related to delivering primary palliative care, with Continuing Medical Education and/or Continuing Education (CME/CE) credits.
Best Practice Treatment Guides & Clinical Interview Guides
Download FREE PDFs
Best practice guides for CF care teams to manage common CF symptoms and engage individuals with CF and their caregivers in effective serious illness conversations. ADAPT-CF guide to assess unmet needs in children under 12.
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.
Patient and Caregiver Educational Materials
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
Trial Description & Design
Palliative care is an interdisciplinary model of care intended to mitigate the suffering and illness burden experienced by patients with serious illnesses, and their families, from the time of diagnosis forward. The illness burden experienced by patients with cystic fibrosis (CF) and their caregivers is characterized by problems in many domains (e.g., physical symptoms, emotional distress, caregiver burden, and need for goal-setting).
Interventions to address the goals of palliative care must be undertaken throughout the course of the illness by CF professionals—an approach known as generalist-level or primary palliative care. At present, there are no standardized, generalizable models of primary palliative care for CF.
We describe the development of a novel primary palliative care intervention for patients with CF created by five CF Centers, key stakeholders, and a palliative care institute dedicated to interprofessional education.
Implement a primary palliative care intervention comprising screening-and-triage workflows, best practice treatment guides for high frequency problems, patient/family and provider education, and a quality improvement (QI) toolkit.
Subaim 1
Evaluate Center-level data on feasibility, uptake, and intervention-related acceptability and satisfaction as measured by: 1) Center-level rates of screening and treatment delivery and 2) acceptability and satisfaction as indicated by patient-, provider- and system-level facilitators and barriers, including cost, and 3) quantitative and qualitative reports from individuals with CF, caregivers, and CF Care Team members.
Subaim 2
Evaluate individual-level data on preliminary outcomes for individuals with CF by comparing ratings on patient- and caregiver-reported outcome measures (e.g., Integrated Palliative Care Outcome Scale, Cystic Fibrosis Questionnaire-Revised, Memorial Symptom Assessment Scale-Cystic Fibrosis, and Brief Assessment Scale for Caregivers) during the trial to baseline ratings and exploring covariates of change (age, race/ethnicity, gender, disease severity, CFTR modifier treatment, psychological distress, and varied indicators reflecting intervention implementation).
