{"database":"biostudies-literature","file_versions":[],"scores":null,"additional":{"omics_type":["Unknown"],"volume":["8(2)"],"submitter":["Dahlerus C"],"funding":["University of Michigan","Centre for Marine Socioecology","Centers for Medicare and Medicaid Services","U.S. Department of Health and Human Services","James A. Haley Veterans&apos; Hospital","U.S. Food and Drug Administration","CHDI Foundation","National Institutes of Health","Teva Pharmaceutical Industries","Craig H. Neilsen Foundation","Patient-Centered Outcomes Research Institute"],"pubmed_abstract":["<h4>Rationale & objectives</h4>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.<h4>Study design</h4>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).<h4>Setting & participants</h4>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.<h4>Analytic approach</h4>Qualitative analysis of major themes to support life goals concept elicitation and survey item development and revision.<h4>Results</h4>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).<h4>Limitations</h4>People that volunteered for participation may reflect self-selection.<h4>Conclusions</h4>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."],"journal":["Kidney medicine"],"pagination":["101203"],"full_dataset_link":["https://www.ebi.ac.uk/biostudies/studies/S-EPMC12856444"],"repository":["biostudies-literature"],"pubmed_title":["Conceptual Development Informing the Kidney Failure Patient Life Goals Survey."],"pmcid":["PMC12856444"],"pubmed_authors":["Balovlenkov E","Carlozzi NE","Price K","Hirth RA","Miner JA","Andress J","Sardone J","Segal JH","Messana JM","Dahlerus C","Roach J","Clark S"],"additional_accession":[]},"is_claimable":false,"name":"Conceptual Development Informing the Kidney Failure Patient Life Goals Survey.","description":"<h4>Rationale & objectives</h4>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.<h4>Study design</h4>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).<h4>Setting & participants</h4>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.<h4>Analytic approach</h4>Qualitative analysis of major themes to support life goals concept elicitation and survey item development and revision.<h4>Results</h4>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).<h4>Limitations</h4>People that volunteered for participation may reflect self-selection.<h4>Conclusions</h4>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.","dates":{"release":"2026-01-01T00:00:00Z","publication":"2026 Feb","modification":"2026-06-20T04:53:12.077Z","creation":"2026-06-20T03:09:34.055Z"},"accession":"S-EPMC12856444","cross_references":{"pubmed":["41623300"],"doi":["10.1016/j.xkme.2025.101203"]}}