Patient-based health status measures in outpatient dialysis. Early experiences in developing an outcomes assessment program.

This paper describes the initial development of a patient-based outcomes assessment program in an outpatient dialysis unit. This project presented four logistical and practical issues that are discussed in this paper: patient acceptance of quarterly administrations of a generic health status survey (the SF-36); timing of administration during dialysis session; respondent burden; and staff burden. Also discussed are three issues related to the clinical use of these assessments: medical record status of SF-36 data; use in clinical decisionmaking; and clinicians' responses to aggregate data from patient-based health status assessments. The investigation reported presents strong evidence of patient acceptance of the SF-36. Data collection problems reflected the nature of a busy dialysis unit, and most have been corrected. Considering functional status, the role functioning of dialysis patients is most adversely affected; among well-being measures, patients are most compromised by pain and lack of energy. Clinicians' reviews of these results point to the need for normative data, information about severity of primary and comorbid diseases, and knowledge of relationships between SF-36 scores and physiologic parameters to make clinical use of generic health outcome assessments.