Developing palliative care interventions in liver disease using formative and summative qualitative evaluation.

Area of Science:

• Palliative Care Medicine
• Health Services Research
• Qualitative Research Methods

Background:

• Integrating palliative care into end-stage liver disease (ESLD) management requires effective interventions.
• Intervention development and evaluation are complex, systematic, and time-intensive processes.
• Qualitative research, including formative and summative evaluations, is vital for understanding intervention mechanisms, refinement needs, and implementation factors.

Purpose of the Study:

• To summarize how qualitative formative and summative evaluation methods can inform the design, adaptation, and evaluation of palliative care integration interventions for ESLD.
• To describe a qualitative summative evaluation study embedded within a larger randomized trial (PALliative Care for end stage LIVER diseases).
• To explore patient, family, and clinician perspectives on the palliative care intervention to understand enactment (fidelity) and provide a roadmap for future integration.

Main Methods:

• Qualitative formative and summative evaluation approaches.
• Embedded qualitative summative evaluation within a 19-site cluster randomized trial.
• Collection and analysis of patient, family, and clinician perspectives on the palliative care intervention.

Main Results:

• Qualitative evaluations provide critical information on intervention feasibility, acceptability, and patient-centeredness.
• The embedded qualitative study explored how the palliative care intervention was enacted (fidelity).
• Demographic data indicate the qualitative sample is representative of the parent randomized clinical trial population.

Conclusions:

• Formative and summative evaluations are essential for improving palliative care interventions in ESLD.
• These evaluations ensure equitable and effective use of scarce palliative care resources.
• Qualitative methods contribute to enhancing patient and caregiver quality of life and overall care experience.