Defining palliative care in cystic fibrosis: A Delphi study

Area of Science:

• Palliative Care
• Cystic Fibrosis Research

Background:

• Palliative care aims to improve quality of life for individuals with serious illnesses.
• A specific definition for palliative care in cystic fibrosis (CF) was needed.

Purpose of the Study:

• To create a CF-specific definition of palliative care.
• To establish a foundation for developing CF-specific palliative care guidelines.

Main Methods:

• Modified Delphi methodology was employed.
• A working group of 36 diverse stakeholders (CF providers, researchers, palliative care experts, patients, caregivers) participated.
• Participants completed questionnaires to rate attributes, rank them, and evaluate proposed definitions.

Main Results:

• An average of 28 participants completed each of the four questionnaires.
• Stakeholder roles were consistently represented across the study.
• Participants noted significant overlap between routine CF care and palliative care.
• A definition relevant across the lifespan was emphasized.

Conclusions:

• A consensus-based definition of palliative care for CF was established using the Modified Delphi methodology.
• This definition will serve as the basis for future CF-specific palliative care guidelines.