Conceptual Development Informing the Kidney Failure Patient Life Goals Survey.

RATIONALE &

OBJECTIVES

To report on the qualitative study supporting concept elicitation and item development for a new survey assessing discussion of patient life goals (D-PaLS) for people with kidney failure (KF) on maintenance dialysis.

STUDY

DESIGN

Three-stage qualitative data collection using a semi-structured group discussion format with an expert panel (stage 1); 2 focus groups (stage 2); and cognitive debriefing interviews (stage 3).

SETTING &

PARTICIPANTS

All participants were recruited nationally in the United States to obtain a diverse convenience sample of KF patients with maintenance dialysis experience, nephrologists, and dialysis clinic staff.

ANALYTIC APPROACH: Qualitative analysis of major themes to support life goals concept elicitation and survey item development and revision.

RESULTS

There was strong consensus for the development of a patient life goals patient-reported outcome measure to support the alignment of patient life goals with treatment planning. Themes from stage 1 included "quality gap-life goals discussions are not happening," "how life goals inform treatment planning," and "starting the life goals conversation." In stages 2 and 3, focus group feedback related to item interpretability; mix of item type; limiting survey burden; and preserving patient anonymity. The final survey contained 8 items (6 core items and 2 check-list items).

LIMITATIONS: People that volunteered for participation may reflect self-selection.

CONCLUSIONS

The new D-PaLS is a brief survey that was based on extensive input from patient and clinical provider stakeholders that supported elicitation of the measure concept and item development. The D-PaLS has the potential to support shared decision-making in treatment planning for people with KF. Stakeholder support is necessary throughout patient-reported outcome measure measure development to ensure content is meaningful and captures experiences and outcomes that are important to the patients.