Abstract: FR-PO906

Challenges to Conducting Kidney Palliative Care Research

Session Information

Category: Dialysis

  • 609 Dialysis: Palliative and End-of-Life Care


  • Assis, Dana, NYU School of Medicine, New York, New York, United States
  • Wright, Rebeca, Johns Hopkins University, Baltimore, Maryland, United States
  • Scherer, Jennifer S., NYU School of Medicine, New York, New York, United States

Despite having significant symptom burden and decreased quality of life, patients with advanced kidney disease have limited exposure to palliative care. This is partly explained by lack of research and evidence for the field. We report on challenges to conducting research in an outpatient kidney palliative care clinic (KPCC).


Patients with ESRD or CKD stage IV/V and their caregivers were approached to participate in a interview study on their experience in a KPCC. Consent was obtained in person during clinic visits from Jan - June 2017.


Thirty three patients were referred to KPCC, with a no show rate of 18%. Fifteen patients met inclusion criteria; ten patients and three caregivers were consented. Cognitive impairment or psychiatric diagnosis led to patient exclusion. Hospitalization, fatigue, or pain led to attrition after consent and the potential bias towards a healthier population being interviewed. Some patients were confused by palliative care or became emotionally distressed during the interview. Patients could stop interviews and supportive conversations took place, however, maintaining a focus on the research question rather than immediately addressing clinical needs was complex. Logistically the consent process was difficult given patients had to stay past their already 60 minute long appointment. Patient physical and cognitive vulnerability, the emotional nature of palliative care topics, and provider-researcher conflict were observed challenges.


We uncovered barriers to palliative care research that are unique to patients living with advanced kidney disease. Future kidney palliative care research will need to consider the patient's emotional and physical state as well as the provider-researcher challenge when crafting study design to encourage patient participation and ongoing study of this essential field.
Funding: ASN Small Grants Program for Scholarly Work in Geriatric Nephrology and Renal Palliative Care

CKD chronic kidney disease ESRD end stage renal disease CM conservative management HD hemodialysis