Patient and caregiver perspectives on treatment strategies and care priorities of childhood steroid-sensitive nephrotic syndrome: a qualitative study
Bibliographic record
Abstract
Objectives We explored the experiences of treatment strategies for steroid-sensitive nephrotic syndrome (SSNS) and care priorities among children living with the condition and their caregivers. Design A qualitative study using semistructured interviews. Data were analysed using reflexive thematic analysis. We coded transcripts in duplicate and developed themes that integrate key concepts across roles. Setting Southern Alberta, Canada. Participants A purposive sample of children aged 8–18 years, with SSNS and their caregivers from a paediatric nephrotic syndrome cohort. Results 28 individuals (10 children and 18 caregivers) participated in this study. All had experienced a relapse after initial diagnosis and steroid treatment. Participants identified how their experiences with SSNS treatments influenced their willingness to accept further steroids and other second-line agents. Findings are elaborated across the following four themes: (1) reluctant acceptance of steroids ( steroid aversion , lack of personalised steroid dosing , altered self-regulation and acknowledging steroid effectiveness ); (2) coping with unexpected relapses ( repeating the cycle , restricted life participation and tempered optimism ); (3) uncertainty about second-line therapies ( striving for stability, cumulative burden of adverse effects and exploring alternatives ) and (4) directing attention to unmet treatment needs and priorities ( mechanistic approaches to therapy , steroid minimisation , child and family involvement and enhanced social supports ). Conclusions Children with SSNS and their caregivers expressed a dislike of steroids and a desire for individualised treatment protocols. Investigation into therapeutic alternatives for SSNS should integrate patients’ preferences, values and care priorities.
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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 | 0.014 | 0.021 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.010 | 0.008 |
| Scholarly communication | 0.004 | 0.004 |
| Open science | 0.002 | 0.005 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.003 | 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".