Unmet Supportive Care Needs in U.S. Dialysis Centers and Lack of Knowledge of Available Resources to Address Them

Abstract

Context: Because of high symptom burden, numerous comorbidities, and shortened life expectancy, dialysis patients are increasingly recognized as appropriate candidates for early and continuous supportive care.

Objectives: The objectives of this study were to describe dialysis professionals' perceptions of the adequacy of supportive care in dialysis centers, barriers to providing it, suggestions for improving it, and familiarity with the existing evidence-based resources for supportive care of dialysis patients.

Methods: The Coalition for Supportive Care of Kidney Patients conducted an online survey of dialysis professionals and administrators solicited through the 18 End-Stage Renal Disease Networks and the Renal Physicians Association.

Results: Only 4.5% of 487 respondents believed their dialysis centers were presently providing high-quality supportive care. They identified bereavement support, spiritual support, and end-of-life care discussions as the top three unmet needs. They reported that lack of a predictive algorithm for prognosis was the top barrier, and "guidelines to help with decision-making in seriously ill patients" was the top priority to improve supportive care. A majority of respondents were unaware that an evidence-based validated prognostic model and a clinical practice guideline to help with decision-making were already available.

Conclusion: Dialysis professionals report significant unmet supportive care needs and barriers in their centers with only a small minority rating themselves as competently providing supportive care. There is an urgent need for education of dialysis professionals about available supportive care resources to provide quality supportive care to dialysis patients.

Keywords: Supportive care; dialysis center; dialysis patients; education; guidelines; supportive care consultation.