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HCC patient-voice sources

Last curated: 2026-10-25

Annotated published sources

  • Norman EML, et al. Qualitative-literature review of 11 HCC studies; identifies physical/treatment burden, psychological coping, social function/stigma, spiritual meaning, and uncertainty. PMID 35974658.
  • Wörns MA, et al. International interviews with 50 patients and 12 clinicians; maps treatment journey and goals. Industry-affiliated authorship/funding should be considered when interpreting framing. PMID 39052152.
  • Patel N, et al. Twenty-five HCC interviews used to build a symptom/impact conceptual model for outcomes research; industry-affiliated study. PMID 34115280.
  • Hansen L, et al. Fourteen patients with terminal HCC contributed 45 longitudinal interviews; strong temporal depth, single regional setting. PMID 25122134.
  • Hansen L, et al. Thirteen caregivers contributed 39 longitudinal interviews; predominantly female and White US sample. PMID 28820518.
  • Moon AM, et al. Qualitative study of patient preferences in HCC treatment decisions; directly relevant to multidisciplinary care. PMID 40453415.
  • Chiba T, et al. Japanese preference study comparing attributes of intermediate/advanced treatments; cross-sectional and region-specific. PMID 31118587.
  • Vogel A, et al. Patient-reported outcomes from REFLECT; randomized treatment comparison but open-label and subject to missingness. PMID 34087115.
  • Lieber SR, et al. Early liver-transplant survivorship interviews with patients and caregivers; not HCC-specific. PMID 34529886.
  • Lieber SR, et al. Twenty liver-transplant recipients informing a survivorship conceptual model; not HCC-specific. PMID 33942480.
  • Mudumbi SK, et al. Rapid review of palliative/hospice interventions in decompensated cirrhosis and HCC; identifies a thin intervention literature. PMID 29698124.

Public organization sources

  • Liver Cancer UK — homepage and public navigation fetched at https://www.livercanceruk.org/ on 2026-08-30.
  • Blue Faery — homepage and public navigation fetched at https://www.bluefaery.org/ on 2026-08-30.
  • International Liver Cancer Association — homepage fetched at https://ilca-online.org/ on 2026-08-30; professional rather than patient-led.
  • Macmillan Cancer Support liver-cancer page — public information/support page fetched at https://www.macmillan.org.uk/cancer-information-and-support/liver-cancer on 2026-08-30.

Public developments checked 2026-10-18

  • Liver Cancer UK — "Liver UK helps shape new European recommendations on liver cancer surveillance", published 2026-09-10, https://livercanceruk.org/news/liver-uk-helps-shape-new-european-recommendations-on-liver-cancer-surveillance/, accessed 2026-10-18. Public explanation of the patient/policy contribution to the European surveillance review (Qurashi 2026, PMID 42819713). This is advocacy participation, not a new society guideline.
  • Liver Cancer UK — homepage, https://livercanceruk.org/, accessed 2026-10-18. Lists a 28 October webinar seeking patients' information/support priorities; event was still upcoming at the sweep date. Web retrieval succeeded while direct HTTP requests remained blocked (403).
  • Blue Faery — "Blue Faery Events", https://www.bluefaery.org/events, accessed 2026-10-18. Lists the free Chicago HCC Lunch & Learn for 24 October, for patients, caregivers and at-risk people. This is an announced education event; delivery, attendance and effectiveness have not been evaluated here.

Public developments checked 2026-10-25

  • Direct HTTP requests to Liver Cancer UK, American Liver Foundation, and American Cancer Society liver-cancer pages returned 200 (they were 403/406 on earlier sweeps). Homepages were retrieved; no new HCC-specific campaign or event report was extracted beyond standing pages. The Liver Cancer UK /news/ path returned 404.
  • Blue Faery events page (https://www.bluefaery.org/events, HTTP 200) was re-fetched. The 24 October Chicago Lunch & Learn listed on 2026-10-18 had passed as of this check; no public outcome, attendance, or evaluation report was retrieved. The Liver Cancer UK 28 October webinar listed on 2026-10-18 had not yet occurred.

Coverage limits

The sources do not adequately represent low- and middle-income countries, rural patients, people lost before specialty referral, patients with severe encephalopathy who cannot participate in interviews, adolescents/young adults, or people whose HCC is discovered outside surveillance. Public web retrieval was limited by site blocking and TLS behavior. Manufacturer-supported qualitative research contributes useful patient concepts but is overrepresented. No private social-media posts, closed groups, or individual stories were collected.