Patient-voice sources — annotated inventory¶
Last curated: 2026-10-25 (one public advocacy source added; earlier rows retain their own access dates).
Peer-reviewed sources¶
| Source | Population / method | Contribution | Limitation |
|---|---|---|---|
| Raj et al. IPOS-Renal validation. PMID 29729346 | Advanced kidney disease; cross-sectional validation | Multi-symptom measurement | Not an intervention study |
| Ju et al. Fatigue core measure workshop. PMID 29551585 | Haemodialysis stakeholders including patients | Makes fatigue a measurable core outcome | Consensus, not prevalence |
| Tong et al. SONG-HD workshop. PMID 27497527 | International patient/professional workshop | Core outcome domains | Dialysis-focused |
| Evangelidis et al. Delphi survey. PMID 28238554 | International haemodialysis stakeholders | Patient-priority ranking | Participation and language selection |
| Hughes et al. Life-participation measure. PMID 40569671 | Two SONG consensus workshops; 130 participants, 18 countries | Core life-participation measure endorsed by consensus | Explicitly not yet piloted or validated in non-KRT CKD |
| Schade van Westrum et al. fatigue study. PMID 40599823 | 414 patients across non-dialysis CKD, dialysis and transplant; nationwide descriptive survey (not qualitative) | Stage-specific fatigue burden, discussion and treatment gaps | Single-country sample; self-report; no comparator |
| James et al. online community analysis. PMID 32673242 | Self-report online community | Symptom and treatment-experience breadth | Self-selection; diagnoses not uniformly verified |
| Wong et al. foregoing-dialysis review. PMID 35285915 | 41 cohorts, 5,102 patients | Survival, quality, utilization and place of death | Heterogeneous observational cohorts |
| Buur et al. CKM vs dialysis review. PMID 34507554 | 25 observational studies | Survival and QoL trade-off | Strong treatment selection bias |
| Scherer et al. kidney palliative-care program. PMID 31295050 | Ambulatory program description | Service-model evidence | Descriptive, no causal comparator |
| Agarwal et al. symptom feedback pilot. PMID 37993776 | Cluster pilot in haemodialysis | Feasibility of routine symptom feedback | Pilot scale; clinical effectiveness unresolved |
| Fishbane et al. KALM-1. PMID 31702883 | 378 haemodialysis patients with pruritus | Quantitative itch and QoL response | Dialysis-only and 12-week horizon |
Public organization and campaign sources¶
| Publisher / page | URL | What it contributes | Accessed |
|---|---|---|---|
| National Kidney Foundation — CKD | https://www.kidney.org/kidney-topics/chronic-kidney-disease-ckd | Patient education and helpline links | 2026-09-02 |
| Kidney Care UK — home | https://kidneycareuk.org/ | Practical, emotional and financial support domains | 2026-09-02 |
| Kidney Health Australia — Kidney Helpline | https://kidney.org.au/ways-we-help/kidney-helpline/ | Navigation and peer-support scope | 2026-09-02 |
| Kidney Foundation of Canada — home | https://kidney.ca/en/ | Peer support, programs and advocacy | 2026-09-02 |
| NKF South Africa — home | https://nkf.org.za/ | African education and patient-support context | 2026-09-02 |
| Kidney Federation of India — home | https://www.kidneyfederationofindia.com/ | Treatment-access assistance context | 2026-09-02 |
| World Kidney Day — 2021 position paper | https://www.worldkidneyday.org/knowledge-bank-files/wkd-2021-position-paper/ | Global patient-centred advocacy framing | 2026-09-02 |
| World Kidney Day — 2027 campaign | https://www.worldkidneyday.org/2027-campaign/ | 2027 theme (11 March 2027) "Kidneys, Heart, and Metabolism: The Core of Your Health" — public-facing adoption of the cardiovascular-kidney-metabolic framing; campaign materials not reviewed | 2026-10-18 |
| National Kidney Foundation — NKF Joined HHS Roundtable on Improving Kidney Care (21 October 2026) | https://www.kidney.org/news-stories/nkf-joined-hhs-roundtable-improving-kidney-care?page=0 | Public advocacy on earlier diagnosis, access across treatment pathways and patient involvement in policy; an organisation account, not evidence of policy effectiveness | 2026-10-25 |
Coverage limits¶
- Searches were English-language and web-index dependent; Francophone, Lusophone, Arabic and many Asian-language sources are under-represented.
- Non-dialysis stages G1–G3, people never referred to nephrology, rural communities and those without internet access are under-represented.
- Dialysis and transplant communities have more organized public infrastructure than conservative-care and early-CKD populations.
- Organization pages describe offered services; they do not establish reach, uptake or effectiveness.
- No private forum content, closed group, identifying detail or long quotation was collected.
- The evidence cannot estimate how common a theme is; it identifies recurring domains to measure.