About the Palliative Care Trial
Improving Life with CF: A Primary Palliative Care Partnership
Massachusetts General Hospital partnered with the MJHS Institute 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 created and tested 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 were 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
- Helped each of the CF Centers plan for implementation of the new palliative care program
During a 18-month implementation phase, the project accomplished the following:
- Implemented 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
- Offered 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
- Created a Quality Improvement toolkit to support implementation
- Conducted baseline and outcome assessments in individuals with CF and their caregivers, along with providers, to evaluate the impact of the intervention
- Conducted focus groups with providers from each of the CF Centers to identify perceptions about the intervention and factors that impact its implementation
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.
Aim 1: 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).