Not yet independently audited
This page was written from verified sources but has not yet passed the independent citation audit. Treat its claims as provisional.
Annotated patient-voice sources — retinoblastoma¶
Last curated: 2026-10-31
Published research¶
| Source | Population / method | Contribution | Limit |
|---|---|---|---|
| Sherief et al. 2023. PMID 36545916 | 13 Ethiopian parents; Amharic/Oromo phenomenological interviews | diagnosis reaction, care, cost, support, uncertainty | small parent-only sample; no prevalence |
| Sherief et al. 2023. PMID 36803347 | 38 Ethiopian caregivers; phone survey | referral route, lag, cost and distance | single centre; recall bias |
| Das et al. 2025. PMID 40719713 | 1,120 Indian children at 20 centres; prospective | decomposes parent, diagnosis and treatment lag | national network not all settings |
| Reynolds et al. 2023. PMID 37442536 | 11 survivors aged 5–17; objective visual tests | contrast and saccades beyond acuity | exploratory sample |
| Morse et al. 2023. PMID 36385462 | 69 school-age survivors and parents | reporter differences; anxiety and QOL | cross-sectional specialist cohort |
| Belson et al. 2023. PMID 36520266 | 101 adolescent/young-adult survivors | vision-specific QOL and overall-QOL correlates | cross-sectional; survivor selection |
| Leclerc et al. 2020. PMID 31886534 | clinical/perioperative review | child and caregiver work around enucleation | not primary qualitative research |
| Schonfeld et al. 2021. PMID 33473166 | 2,052 long-term survivors | heritable/non-heritable future-risk distinction | historical treatment eras |
| Tonorezos et al. 2020. PMID 32422154 | international consensus review | adult surveillance uncertainty | no evidence routine imaging improves outcome |
| Namjoshi et al. 2026. PMID 42867058 | 15 parents and 6 physicians; three focus groups at one southern-Indian ocular oncology centre | parent–physician trust as a reported determinant of adherence in a collectivist LMIC setting | single centre; qualitative; not an effect size for abandonment |
| Williams et al. 2026. PMID 41727643; full text PMC12920227, Table 1 | Three-centre mixed-diagnosis interviews in Guatemala, Jordan and Zimbabwe: 9 adolescent patients (1 retinoblastoma), 28 caregivers (15 retinoblastoma), 19 clinicians | visible difference, community stigma and discrepancies between patient and proxy accounts | pooled osteosarcoma/retinoblastoma analysis; early after diagnosis; no prevalence or intervention-effect estimate; full text checked 2026-10-31 |
Public organization sources¶
| Publisher | Page | Use | Access |
|---|---|---|---|
| World Eye Cancer Hope | https://wechope.org/ | global mission, awareness, family/survivor support, One Rb World | 2026-09-01 |
| Childhood Eye Cancer Trust | https://chect.org.uk/ | UK lifelong support, practical grants, awareness and story hub | 2026-09-01 |
| Canadian Retinoblastoma Society | https://www.rbsociety.ca/ | peer support, advocacy, patient-engaged research | 2026-09-01 |
| Canadian Retinoblastoma Society | https://www.rbsociety.ca/what-we-do | family network, gatherings, research role | 2026-09-01 |
| CanKids KidsCan | https://cankidsindia.org/retinoblastoma/ | Indian partner network, navigation, genetics and survivorship | 2026-09-01 |
| World Eye Cancer Hope | https://wechope.org/onerbworld/ | One Retinoblastoma World 2026 (12–14 September, San Antonio): public program page still live after the dates; no outcome claim is made from it | 2026-10-17 |
| World Eye Cancer Hope | The Lone Star State Welcomes One Retinoblastoma World 2026: Day One Review (published 2026-10-26) | Public conference recap: family care coordination, adult-survivor experience, prosthetic eyes, child life and invitation for lived-experience input to a treatment-consequence score; no clinical efficacy or score-validation claim | 2026-10-31 |
Search ledger¶
PubMed E-utilities searches run 2026-09-01:
retinoblastoma[Title/Abstract] AND (parent OR caregiver OR psychosocial OR lived experience OR quality of life)retinoblastoma[Title/Abstract] AND (visual acuity OR vision outcome OR visual outcome OR quality of life)retinoblastoma AND enucleation orbital implant prosthesis psychosocialretinoblastoma[Title/Abstract] AND (diagnostic delay OR delayed diagnosis OR awareness OR treatment abandonment)hereditary retinoblastoma subsequent malignant neoplasm second cancer melanoma cohort
Public-web searches covered global, UK, Canadian, Indian and African organizations. Only organization-specific sites that resolved were included.
2026-10-31 update: checked the WE C Hope blog, CHECT homepage and /blog/, the Canadian Retinoblastoma Society homepage and events listing, and the CanKids retinoblastoma page. The directly fetched WE C Hope listing identified the 2026-10-26 conference recap catalogued above; the web-tool listing omitted it. The article body was read directly. Its listing excerpt refers to an earlier Hawaii meeting, whereas the article body describes San Antonio; no attendance numbers or listing-excerpt event details were extracted. No additional newly dated in-window material was identified on the other retrieved pages. The Canadian Retinoblastoma Society — “Events” listing (accessed 2026-10-31) still gives a November eye-loss meetup with its date to be determined; no event date or outcome is inferred. This is a page-bounded check, not an exhaustive organization-site search.
Excluded source types¶
- Private social-media groups and closed forums.
- Individual fundraising pages and single-family campaigns.
- Reddit threads surfaced by search, because they are neither representative nor needed once published and organization-level sources were available.
- Stories requiring identification or reconstruction of a private child's medical trajectory.
- Organization statistics that could not be independently contextualized.
Coverage limits¶
The layer is not a census of experience. It is weighted toward English-language PubMed indexing, specialist-centre survivors and organizations with technically accessible websites. Children with profound visual impairment, families who abandoned treatment, children who died, people outside referral systems and non-English-speaking survivors are likely underrepresented. The Ethiopian qualitative study improves geographic diversity but cannot represent Africa. No claim of thematic saturation is made.