Alycia A Bristol1, Sobaata Chaudhry2, Dana Assis3, Rebecca Wright4, Derek Moriyama5, Katherine Harwood6, Abraham A Brody7,8, David M Charytan9, Joshua Chodosh8, Jennifer S Scherer8,9. 1. 16177University of Utah College of Nursing, Salt Lake City, UT, USA. 2. NYU School of Medicine, New York, NY, USA. 3. 1940Yale New Haven Health, New Haven, CT, USA. 4. Johns Hopkins School of Nursing, Baltimore, MD, USA. 5. 12223Keck School of Medicine of University of Southern California, CA, USA. 6. Columbia University-Morgan Stanley Children's Hospital, New York, NY, USA. 7. Hartford Institute for Geriatric Nursing, NYU Rory Meyers College of Nursing, New York, NY, USA. 8. Division of Geriatrics and Palliative Care, Department of Internal Medicine, NYU School of Medicine, New York, NY, USA. 9. Division of Nephrology, Department of Internal Medicine, NYU School of Medicine, New York, NY, USA.
Abstract
OBJECTIVES: The ideal clinical model to deliver palliative care to patients with advanced kidney disease is currently unknown. Internationally, ambulatory kidney palliative care clinics have emerged with positive outcomes, yet there is limited data from the United States (US). In this exploratory study we report perceptions of a US-based ambulatory kidney palliative care clinic from the perspective of patient and caregiver attendees. The objective of this study was to inform further improvement of our clinical program. METHODS: Semi-structured interviews were conducted to elicit the patient and caregiver experience. Eleven interviews (8 patients with chronic kidney disease stage IV or V and 3 caregivers) were analyzed using qualitative description design. RESULTS: We identified 2 themes: "Communication addressing the emotional and physical aspects of disease" and "Filling gaps in care"; Subthemes include perceived value in symptom management, assistance with coping with disease, engagement in advance care planning, program satisfaction and patient activation. SIGNIFICANCE OF RESULTS: Qualitative analysis showed that attendees of an ambulatory kidney palliative care clinic found the clinic enhanced the management of their kidney disease and provided services that filled current gaps in their care. Shared experiences highlight the significant challenges of life with kidney disease and the possible benefits of palliative care for this population. Further study to determine the optimal model of care for kidney palliative care is needed. Inclusion of the patient and caregiver perspective will be essential in this development.
OBJECTIVES: The ideal clinical model to deliver palliative care to patients with advanced kidney disease is currently unknown. Internationally, ambulatory kidney palliative care clinics have emerged with positive outcomes, yet there is limited data from the United States (US). In this exploratory study we report perceptions of a US-based ambulatory kidney palliative care clinic from the perspective of patient and caregiver attendees. The objective of this study was to inform further improvement of our clinical program. METHODS: Semi-structured interviews were conducted to elicit the patient and caregiver experience. Eleven interviews (8 patients with chronic kidney disease stage IV or V and 3 caregivers) were analyzed using qualitative description design. RESULTS: We identified 2 themes: "Communication addressing the emotional and physical aspects of disease" and "Filling gaps in care"; Subthemes include perceived value in symptom management, assistance with coping with disease, engagement in advance care planning, program satisfaction and patient activation. SIGNIFICANCE OF RESULTS: Qualitative analysis showed that attendees of an ambulatory kidney palliative care clinic found the clinic enhanced the management of their kidney disease and provided services that filled current gaps in their care. Shared experiences highlight the significant challenges of life with kidney disease and the possible benefits of palliative care for this population. Further study to determine the optimal model of care for kidney palliative care is needed. Inclusion of the patient and caregiver perspective will be essential in this development.
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