Abstract
BACKGROUND: Hemodialysis (HD) patients experience significant symptom burden that is often undertreated. OBJECTIVE: This study identified (1) barriers to symptom management in the HD population, (2) potential targets for improving symptom burden, (3) provider attitudes toward palliative care for HD patients, and (4) perceptions of how transplant eligibility impacts care. DESIGN: Semistructured, one-on-one interviews were conducted, audiotaped, and transcribed. Data were analyzed qualitatively by two investigators to identify discrete themes. SETTING/SUBJECTS: Health care providers (HCPs) and caregivers were recruited (June to October 2012) from three outpatient HD units in New York City. MEASUREMENTS: Open-ended questions were used with follow-up probes. RESULTS: Interviews were completed with 34 HCPs (8 physicians, 2 nurse practitioners, 4 social workers, 13 registered nurses, 7 patient care technicians) and 20 caregivers (14 family members, 5 home health aides, 1 friend). Barriers to symptom control were identified in three areas: (1) provider unawareness of symptoms, (2) provider's uncertainty as to whose responsibility it is to treat symptoms, and (3) inherent difficulty in symptom management. Ideas for ameliorating symptoms included enhancing systems for patient/caregiver education, improving systems for HCP communication with other disciplines, and encouraging alternative methods of dialysis when appropriate. HCPs also expressed discomfort with the term "palliative care." CONCLUSIONS: Renal HCPs are often unaware of the magnitude of symptom burden in their HD patients. This study found that there is lack of ownership for assessing and treating these symptoms. Providers also feel certain symptoms are "untreatable." Research is needed to develop effective treatment strategies for HD populations.