Conceptual Development Informing the Kidney Failure Patient Life Goals Survey

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.

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).

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.

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

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).

People that volunteered for participation may reflect self-selection.

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.