Building an Outpatient Kidney Palliative Care Clinical Program

Area of Science:

• Nephrology
• Palliative Care
• Health Services Research

Background:

• Advanced chronic kidney disease (CKD) and end-stage renal disease (ESRD) significantly impact patients' quality of life, symptom burden, and healthcare utilization.
• End-of-life care for CKD/ESRD patients is often discordant with their stated preferences.
• Early integration of palliative care into outpatient nephrology practice can enhance symptom management, emotional support, and advance care planning.

Purpose of the Study:

• To describe the application of participatory action research (PAR) methods for developing an outpatient integrated nephrology and palliative care program.
• To address stakeholder concerns and adapt a successful kidney palliative care model for a large urban medical center.

Main Methods:

• Utilized participatory action research (PAR) to engage stakeholders in program development.
• Thematically analyzed stakeholder concerns to inform the adaptation of an existing outpatient kidney palliative care model.
• Identified stakeholder needs and challenges in implementing integrated care.

Main Results:

• A shared understanding of the clinical need for palliative care in nephrology was established.
• Stakeholders expressed apprehension towards practice changes, necessitating modifications to the base model.
• Actionable steps were developed based on stakeholder feedback to create a tailored integrated care program.

Conclusions:

• Developing innovative clinical care models requires careful consideration of stakeholder concerns.
• Participatory action research fosters stakeholder engagement, builds partnerships, and promotes shared ownership for practice innovation.
• A conceptual model for an integrated nephrology and palliative care program was synthesized, emphasizing stakeholder collaboration.