Core Outcome Measure for Life Participation in Patients with CKD
Bibliographic record
Abstract
Key Points Patients, caregivers, and health professionals support the use of standardised outcomes in nephrology - life participation as the core outcome measure for life participation in patients with CKD. Further work is needed to pilot and validate the standardised outcomes in nephrology - life participation measure in patients with CKD before the need for KRT. A core outcome measure will support consistent reporting of life participation in trials in patients with CKD. Background Life participation is of critical importance to patients with CKD not requiring KRT, their caregivers, and health professionals. However, life participation is rarely and inconsistently assessed in trials in CKD. The aim was to establish a core outcome measure for life participation in patients with CKD not requiring KRT. Methods An online (English language) and an in-person (Spanish language) consensus workshop, 1 hour in length, were held in March and April 2024, respectively, and were held to discuss and establish a meaningful, relevant, and feasible core patient-reported outcome measure for life participation for trials in CKD. Transcripts were analyzed thematically. Results Workshops included 130 participants, including 74 patients and caregivers, and 56 health professionals, from 18 countries. Four themes were identified. Enabling interpretation within individual contexts and circumstances included considering relevance to patients' own priorities, capturing key life activities common to all patients, reflecting the goal of leading a fulfilling life, acknowledging the variability and multiplicity of domains, and facilitating linguistic and cultural translation. Having broad clinical relevance across CKD meant covering the spectrum of CKD stages and diagnoses and allowing comparison across treatment stages. Supporting widespread implementation entailed minimizing burden of administration and completion, establishing psychometric robustness, seeking endorsement to legitimize the measure, and ensuring accessibility and acceptability across different settings. Highlighting opportunities to address life participation captured promoting person-centered clinical care and generating ideas for novel interventions to improve life participation. Conclusions A core outcome measure for life participation in patients with CKD should enable a patient to interpret life participation in their own context, have applicability across the CKD population, and be psychometrically robust and feasible to implement. Measuring life participation in a consistent and meaningful way across trials can better support patient-centered decision making and outcomes.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.023 | 0.057 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.002 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.001 | 0.002 |
| Open science | 0.001 | 0.004 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.007 | 0.001 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".