A diagnosis of advanced chronic kidney disease or end-stage renal disease represents a significant life change for patients and families. Individuals often experience high symptom burden, decreased quality of life, increased health care utilization, and end-of-life care discordant with their preferences. Early integration of palliative care with standard nephrology practice in the outpatient setting has the potential to improve quality of life through provision of expert symptom management, emotional support, and facilitation of advance care planning that honors the individual's values and goals.
Objectives
This special report describes application of participatory action research methods to develop an outpatient integrated nephrology and palliative care program.
Methods
Stakeholder concerns were thematically analyzed to inform translation of a known successful model of outpatient kidney palliative care to a practice in a large urban medical center in the U.S.
Results
Stakeholder needs and challenges to meeting these needs were identified. We uncovered a shared understanding of the clinical need for palliative care services in nephrology practice but apprehension toward practice change. Action steps to modify the base model were created in response to stakeholder feedback.
Conclusion
The development of a model of care that provides a new approach to clinical practice requires attention to relevant stakeholder concerns. Participatory action research is a useful methodological approach that engages stakeholders and builds partnerships. This creation of shared ownership can facilitate innovation and practice change. We synthesized stakeholder concerns to build a conceptual model for an integrated nephrology and palliative care clinical program.
