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Patient-voice sources — annotated inventory

Last curated: 2026-09-02.

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

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.