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HCC patient voice — method and ethics

Last curated: 2026-08-30

Purpose

This layer preserves aggregate patient and caregiver experience that efficacy trials and guideline tables underrepresent. It informs research questions and care design; it is not medical advice and does not treat testimony as efficacy evidence.

Method

Sources were identified through live PubMed E-utilities searches and reverified on 2026-08-30 for HCC qualitative experience, quality of life, caregiver experience, treatment preferences, transplant survivorship, and palliative care. Public organization sites were fetched directly; HTTP result and access date are recorded in organizations.md.

Themes were included only when supported by at least two sources. Evidence priority was:

  1. HCC-specific systematic qualitative synthesis;
  2. HCC-specific qualitative interviews;
  3. caregiver studies;
  4. liver-transplant studies that include broader transplant populations, explicitly labeled indirect;
  5. public patient-organization resources.

Ethics

  • Public sources only.
  • Themes are paraphrased in aggregate.
  • No private individual's name, handle, diagnosis details, or identifying information is recorded.
  • Direct quotations are not used in this layer.
  • Organization inclusion is not endorsement.
  • Industry-funded qualitative studies remain usable but their provenance is noted in sources.md.
  • Transplant evidence not restricted to HCC is not represented as HCC-specific.

Files

  • organizations.md — verified public organizations and retrieval limits.
  • themes.md — aggregate themes with at least two sources each.
  • sources.md — annotated evidence and coverage limitations.

Coverage limits

The retrieved qualitative literature is small, concentrated in high-income settings, often recruited from specialist centres, and underrepresents Africa, Latin America, South Asia, rural populations, patients not receiving specialty care, Child-Pugh C disease, and non-English public narratives. Several studies were sponsored or coauthored by manufacturers; that does not invalidate the interviews but may shape question framing and publication priorities. Online organization availability also reflects the technical ability to fetch a site on one date.