Preliminary Testing of the Discussion of Patient Life Goals Patient-Reported Outcome Measure for Dialysis Facilities

Abstract

Rationale & Objectives

To test a new patient-reported outcome measure that assesses end-stage kidney disease (ESKD) maintenance dialysis patients’ experience with life goals discussions with their dialysis facility care team.

Study Design

Observational cross-sectional study. Survey data collected via REDCap, paper form or telephone in a convenience sample of patients with ESKD receiving maintenance dialysis in the United States.

Settings & Participants

People aged 18 years or older with ESKD receiving maintenance hemodialysis or peritoneal dialysis in US dialysis facilities between the June and December 2020 study period.

Exposures

Testing of 6 items providing the core quality assessment and 1 item measuring whether 1 or more members of the treatment team discussed life goals with the patient.

Outcomes

Preliminary reliability and validity of the Discussion of Patient Life Goals survey (D-PaLS).

Analytic Approach

Exploratory factor analysis (EFA), confirmatory factor analysis (CFA), and item response theory methods, including the graded response model (GRM) and differential item functioning (DIF).

Results

Of 517 participants, 479 completed the survey via REDCap; 38 completed the survey via paper or telephone. EFA and CFA supported the unidimensionality of the 6 core items. GRM overall and item fit analyses and DIF analyses supported retention of all core items. Preliminary reliability data indicated very good internal consistency (Cronbach’s alpha = 0.84). Known-groups validity was supported whereby individuals receiving home dialysis had more positive responses, than those receiving in-center hemodialysis.

Limitations

Study participants were not fully representative of the US ESKD dialysis population.

Conclusions

Preliminary analyses indicate the D-PaLS has excellent psychometric properties. The measure provides 2 important quality metrics: facilities’ level of engagement talking with patients about their life goals and the percentage of patients reporting who on the treatment team talks with them about their life goals. Additional work is needed to establish comprehensive reliability and validity to support the clinical utility of this measure in patient care.

Plain Language Summary

The Discussion of Patient Life Goals survey (Item S1) was developed based on conversations we had with people with kidney failure and kidney doctors who felt it was important that discussing patient life goals should be part of kidney replacement treatment planning. To make sure this patient survey accurately assesses patient-reported experience with dialysis facility care, we carried out a series of statistical tests. Our testing results showed that the survey meets the standards for initial reliability and validity. The patient life goals survey is also very short, which will make it easier for patients to take. The survey fills a need for more patient-reported outcome measures for people being treated for kidney failure.