Patient and Caregiver Experiences Living with Advanced Kidney Disease

Background: Advanced chronic kidney disease (ACKD), affects hundreds of thousands of people and their caregivers degrading patient and caregiver quality of life (QOL). Integration of palliative care (PC) into care for people living with ACKD has been suggested as a means to improve the quality of life for patients and their non-professional caregivers. However, relatively little research has examined ACKD patient/caregiver perceptions regarding the role of PC. The specific aims of this study are: (1) Describe patients’ and caregivers’ experiences with and perceptions of living with ACKD, including symptoms/symptom management, decision-making around disease management choices, and other perceived gaps/challenges in care; and (2) explore ACKD patients’ and caregivers’ understanding of palliative care and their perspectives regarding what role, if any, palliative care should play in managing ACKD.
Methods: This qualitative descriptive study identified concerns of patients with ACKD, and their caregivers related to their health and healthcare. Twenty-four interviews were conducted (twenty-two with patients) with participants purposively sampled from dialysis clinics at the University of Virginia. Data were simultaneously collected and analyzed to create codes and eventually categories and themes. Memo-writing was used to document key decision points.
Findings: This qualitative descriptive study identified four themes: (1) ACKD impacts patients physically, emotionally, socially, and economically; (2) Patients use a range of self-management strategies learned through trial and error from other patients and clinicians; (3) Decision-making is complex, often not explicit/elucidated, and ongoing throughout kidney replacement therapy (RRT); and (4) Lack of familiarity with PC, perceived as unnecessary during illness stability, but potentially useful during exacerbations/periods of decline. Patients do not see need for palliative care services now, but some would see utility if they experienced increased complexity/instability in their clinical condition. In general, patients preferred to access services via their usual team of clinicians.
Conclusion: The findings highlighted the challenges ACKD patients face in living with their disease and the strategies they employ to care for themselves. Patients were not familiar with PC. However, they could envision a role for increased access to PC, particularly if delivered by their nephrology team within their usual care settings.