Annotated patient-voice sources — retinoblastoma¶
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 |
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 |
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.
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.