ArticleEuropean journal of human genetics : EJHG2018
Knowledge, experiences and attitudes concerning genetics among retinoblastoma survivors and parents.
Article in European journal of human genetics : EJHG, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.
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Who cites it
17 citing papers in PubMed, 35 citations in OpenAlex.
- Article
- Narrative review on ethical and psychological issues raised by genetic and genomic testing in pediatric oncology care.Journal of genetic counseling · 2025Review
- Exploring Literacy and Knowledge Gaps and Disparities in Genetics and Oncogenomics Among Cancer Patients and the General Population: A Scoping Review.Healthcare (Basel, Switzerland) · 2025Review
- Article
- Development of a Patient-Centered Pathway of Care for Retinoblastoma Patients: A Mixed-Methods Pilot Study.Oncology · 2024Article
- Parents' experiences with large-scale sequencing for genetic predisposition in pediatric renal cancer: A qualitative study.Psycho-oncology · 2022Article
- Genetic Testing in the Pediatric Nephrology Clinic: Understanding Families' Experiences.Journal of pediatric genetics · 2022Article
- Cancer predisposing syndrome: a retrospective cohort analysis in a pediatric and multidisciplinary genetic cancer counseling unit.International journal of clinical oncology · 2022Article
- Parents' Awareness and Perception of Children's Eye Diseases in Madinah, Saudi Arabia: A Cross-Sectional Study.Cureus · 2022Article
- Review
- Living with heritable retinoblastoma and the perceived role of regular follow-up at a retinoblastoma survivorship clinic: 'That is exactly what I have been missing'.BMJ open ophthalmology · 2021Article
- Patient-reported outcome measures for retinoblastoma: a scoping review.Journal of patient-reported outcomes · 2020Article
- Patient knowledge, experiences and preferences regarding retinoblastoma and research: A qualitative study.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- Parent Knowledge of Screening and Genetic Testing in Retinoblastoma.Journal of ophthalmology · 2020Article
- Expanding the phenotypic spectrum associated with OPHN1 variants.European journal of medical genetics · 2019Article
- Parental experience with an ocular genetic counseling services in Saudi Arabia.Saudi journal of ophthalmology : official journal of the Saudi Ophthalmological SocietyArticle
- Article
Corrections and comments
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Authors and funding
5 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Clinical genetic services are increasingly providing a more nuanced understanding of genetic disease diagnostics and future risk for patients. Effectively conveying genetic information is essential for patients to make informed decisions. This is especially important for survivors of heritable cancers such as retinoblastoma (childhood eye cancer), where survivors who carry a germline mutation in the RB1 gene are at increased risk of second cancers in adulthood, and of passing on the disease risk to future offspring. We conducted focus groups with adult survivors of retinoblastoma and parents of children with retinoblastoma, to uncover their knowledge of, experiences with and attitudes about retinoblastoma genetics and related impacts of the cancer. Results revealed that participants understood that retinoblastoma was a genetic disease, but often misunderstood the implications of genetics on cancer phenotype and risk. Experiences with genetic testing and counseling were generally positive, however, participants reported challenges in accessing genetic information and psychosocial support. Participants suggested more educational resources, peer-to-peer counseling, and psychosocial support would enhance uptake of important genetic information. The results of the study will inform patient-oriented approaches to deliver comprehensive genetic healthcare.
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Registered trials
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