ArticleHealth and quality of life outcomes2007
Health-related quality of life of child and adolescent retinoblastoma survivors in the Netherlands.
Article in Health and quality of life outcomes, 2007. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 33 papers, 3 of them syntheses that pooled it.
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Who cites it
33 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Considering quality of life for children with cancer: a systematic review of patient-reported outcome measures and the development of a conceptual model.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2014Pooled it
- Identifying determinants of quality of life of children with cancer and childhood cancer survivors: a systematic review.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2011Pooled it
- Quality of life in survivors of childhood cancer: a systematic review of the literature (2001-2008).Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2009Pooled it
- Health-related quality of life and visual function in retinoblastoma survivors with ocular prostheses: a cross-sectional study.Scientific reports · 2026Article
- Vision-related quality of life compared to generic measures in retinoblastoma survivors.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023Article
- Retinoblastoma and vision.Eye (London, England) · 2023Review
- Psychosocial outcomes and quality of life among school-age survivors of retinoblastoma.Pediatric blood & cancer · 2023Article
- Danish heritable retinoblastoma survivors' perspectives on reproductive choices: "It's important for me, not to pass on this condition".Journal of genetic counseling · 2023Article
- Interrater reliability and agreement between children with visual impairment and their parents on participation and quality of life.Acta ophthalmologica · 2022Article
- Cognitive and Adaptive Functioning in Youth With Retinoblastoma: A Longitudinal Investigation Through 10 Years of Age.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2021Article
- Identification of Evidence for Key Positive Psychological Constructs in Pediatric and Adolescent/Young Adult Patients with Cancer: A Scoping Review.Journal of adolescent and young adult oncology · 2021Article
- Quality of Life and Participation of Children With Visual Impairment: Comparison With Population Reference Scores.Investigative ophthalmology & visual science · 2021Article
- A study analyzing the health-related quality of life of retinoblastoma survivors in India.Indian journal of ophthalmology · 2021Article
- 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
- Impact of enucleation on adult retinoblastoma survivors' quality of life: A qualitative study of survivors' perspectives.Palliative & supportive care · 2020Article
- Number, frequency and time interval of examinations under anesthesia in bilateral retinoblastoma.Graefe's archive for clinical and experimental ophthalmology = Albrecht von Graefes Archiv fur klinische und experimentelle Ophthalmologie · 2020Article
- Quality of Life (QoL) and Psychosocial Outcomes in Adult Survivors of Unilateral Retinoblastoma (RB) in China.Journal of ophthalmology · 2020Article
- Hearing loss and quality of life in survivors of paediatric CNS tumours and other cancers.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2019Article
- Vision-Targeted Health-Related Quality of Life in Adult Survivors of Retinoblastoma.JAMA ophthalmology · 2018Article
- Structural changes of the macula and optic nerve head in the remaining eyes after enucleation for retinoblastoma: an optical coherence tomography study.BMC ophthalmology · 2017Article
Corrections and comments
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Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundTo assess health-related quality of life (HRQoL) in children (8-11 years) and adolescents (12-18 years) who survived retinoblastoma (RB), by means of the KIDSCREEN self-report questionnaire and the proxy-report version.
methodsThis population-based cross-sectional study (participation rate 70%) involved 65 RB survivors (8-18 years) and their parents. Child/adolescents' and parents' perception of their youth's HRQoL was assessed using the KIDSCREEN, and the results were compared with Dutch reference data. Relations with gender, age, marital status of the parents, and visual acuity were analyzed.
resultsRB survivors reported better HRQoL than did the Dutch reference group on the dimensions "moods and emotions" and "autonomy". Increased ratings of HRQoL in RB survivors were mainly seen in perceptions of the younger children and adolescent girls. RB survivors with normal visual acuity scored higher on "physical well-being" than visually impaired survivors. Age was negatively associated with the dimensions "psychological well-being", "self-perception" (according to the child and parent reports) and "parent relations and home life" (according to the child). "Self-perception" was also negatively associated with visual acuity (according to the child). Only parents of young boys surviving RB reported lower on "autonomy" than the reference group, and parents of low visual acuity and blind RB survivors reported higher on "autonomy" than parents of visually unimpaired survivors. Survivors' perceptions and parents' perceptions correlated poorly on all HRQoL dimensions.
conclusionRB survivors reported a very good HRQoL compared with the Dutch reference group. The perceptions related to HRQoL differ substantially between parents and their children, i.e. parents judge the HRQoL of their child to be relatively poorer. Although the results are reassuring, additional factors of HRQoL that may have more specific relevance, such as psychological factors or coping skills, should be explored.
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