CF Palliative Care Project
Pragmatic Implementation Trial of a CF Primary Palliative Care Intervention (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.
Webinars
- 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
- 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
Take support to the next level.
- 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.
Patient and Caregiver Educational Materials
Access FREE Resources
- Educational resources for individuals with CF and their families.
