title: Lack of listing status awareness: results of a single-center survey of hemodialysis patients.
abstract: This study surveyed hemodialysis patients in an urban transplant center serving a predominantly African American population to identify existing and potential barriers to transplantation. The survey used the Dialysis Patient Transplant Questionnaire (DPTQ) to collect self-reported data including interest in a deceased donor kidney transplant and self-reported listing status. We compared patients' survey data to their UNOS listing and computerized medical record at time of interview. Among the 116 patients surveyed, 83 (71.6%) reported interest in a deceased donor kidney transplant. Eighteen (52.9%) of the 34 patients undergoing pretransplantation workup were unaware of their true listing status, and 88.9% of these patients mistakenly believed they were wait listed. All of the patients who mistakenly thought they were listed were undergoing workup. Finding that a significant number of hemodialysis patients who want a deceased donor kidney transplant mistakenly think they are listed when they are not is a documentable deficiency in communication and a potential barrier to transplantation. The finding highlights a correctable problem in communication and work flow that could help to improve transplant center effectiveness. It also reveals that self-reported waiting list status significantly overestimated true waiting list status for our patients at time of interview.
authors.affiliation: Department of Medicine, Section of Nephrology and Kidney Transplantation, Temple University School of Medicine, Philadelphia, PA, USA. avrum.gillespie@tuhs.temple.edu
authors.forename: A
authors.initials: A
authors.lastname: Gillespie
authors.forename: H
authors.initials: H
authors.lastname: Hammer
authors.forename: J
authors.initials: J
authors.lastname: Lee
authors.forename: C
authors.initials: C
authors.lastname: Nnewihe
authors.forename: J
authors.initials: J
authors.lastname: Gordon
authors.forename: P
authors.initials: P
authors.lastname: Silva
mesh_terms: D000328:Adult; D001741:Black or African American; D000368:Aged; D000369:Aged, 80 and over; D003142:Communication; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007676:Kidney Failure, Chronic / Q000628:therapy*; D016030:Kidney Transplantation / Q000706:statistics & numerical data; D008297:Male; D008875:Middle Aged; D010465:Perception; D010817:Physician-Patient Relations; D006435:Renal Dialysis / Q000523:psychology / Q000706:statistics & numerical data*; D011795:Surveys and Questionnaires; D014850:Waiting Lists