Patient and Caregiver Perceptions of Health Risks Associated with CKD: A Thematic Synthesis of Qualitative Studies
Bibliographic record
Abstract
Background: People with chronic kidney disease follow varying disease trajectories, but it is unclear how they understand and use information about their individual risk of adverse outcomes. We aimed to thematically synthesize the published qualitative literature on how patients with chronic kidney disease not receiving kidney replacement therapy and their care partners perceive their individual risk of disease progression, kidney failure, and death. Methods: We searched relevant electronic databases for qualitative studies in adults with chronic kidney disease not receiving kidney replacement therapy or their care partners, and that explored perceptions of individual risks of progression to kidney failure or death. Studies were excluded if participants had committed to a kidney replacement therapy or were receiving palliative or end-of-life care. Two research team members screened titles and abstracts and retrieved relevant full-text articles for review. Disagreements were resolved through discussion. We extracted details of included studies and conducted a thematic synthesis of findings captured descriptively or as participant quotes from primary studies. Results: Of the 7671 citations screened, we included 39 studies. All studies involved patients living with chronic kidney disease, and 5 involved care partners. Only 4 studies addressed perspectives on risk and prognosis as the primary research objective. We characterized 5 themes – Participants conveyed a lack of personalized conversations (Theme 1) and limited prognostic understanding (Theme 2), which contributed to decisional conflict when choosing between kidney failure treatment options that they perceived as equally unappealing (Theme 3). Individuals’ readiness and acceptance of information about their individual risks influenced if and how they took action to modify potential outcomes (Theme 4) and anticipated implications for life participation (Theme 5). Conclusion: Few qualitative studies have explored the perspectives of patients and their care partners specifically related to their individual risks of kidney failure and death. Our findings highlight a lack of discussions about perceived risk and need for additional supports to facilitate decisions as patients' chronic kidney disease progresses.
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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 | 0.100 | 0.146 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.003 | 0.002 |
| Bibliometrics | 0.010 | 0.013 |
| Science and technology studies | 0.006 | 0.008 |
| Scholarly communication | 0.007 | 0.011 |
| Open science | 0.003 | 0.010 |
| Research integrity | 0.003 | 0.003 |
| Insufficient payload (model declined to judge) | 0.004 | 0.000 |
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".