{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,14]],"date-time":"2026-05-14T09:08:09Z","timestamp":1778749689598,"version":"3.51.4"},"reference-count":38,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2026,5,14]],"date-time":"2026-05-14T00:00:00Z","timestamp":1778716800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2026,5,14]],"date-time":"2026-05-14T00:00:00Z","timestamp":1778716800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100005760","name":"University of Gothenburg","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100005760","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Sci Rep"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>\n                    Retinoblastoma (RB) survivors who have undergone enucleation and use ocular prostheses may face long-term challenges related to visual function and overall well-being. This study aimed to evaluate health-related quality of life (HR-QoL) and visual function in this population, addressing a gap in knowledge regarding their lived experiences and functional vision. This cross-sectional study included 12 unilateral and 3 bilateral RB survivors (10 girls, 5 boys; mean age 15.5\u00a0years, range 6.8\u201326.5), all treated with unilaterally enucleation and an ocular prosthesis at Sahlgrenska University Hospital, Sweden (2000\u20132019). HR-QoL was assessed using the Paediatric Quality of Life Inventory (PedsQL), both self- and parent-reports. Functional vision was evaluated by best-corrected visual acuity (BCVA) and structured history-taking of perceptual visual dysfunctions (PVDs). Results were compared with age-matched healthy controls. Self-reported PedsQL total score (82.5) equalled normative data (83.0) and parents\u2019 report (82.5). Parents\u2019 reports were comparable to published parental norms (82.5 vs. 87.6). Survivors with subnormal BCVA (\u2265\u20090.2 LogMAR) had significantly lower self-reported HR-QoL scores than those with normal vision (64.1 vs. 88.0,\n                    <jats:italic>p<\/jats:italic>\n                    \u2009=\u20090.014), a difference not reflected in parent-reports. Survivors reported more PVDs\u2009\u2265\u20091 area (median 1, range 1\u20134) than controls (9\/15 vs. 1\/15,\n                    <jats:italic>p<\/jats:italic>\n                    \u2009=\u20090.005). The number of affected PVD areas correlated with age (\n                    <jats:italic>r<\/jats:italic>\n                    \u2009=\u20090.59,\n                    <jats:italic>p<\/jats:italic>\n                    \u2009=\u20090.022), but not with BCVA or PedsQL score. RB survivors with ocular prostheses require holistic care that includes assessment of HR-QoL and functional vision, beyond visual acuity, to identify unmet needs and guide interventions that support overall well-being and optimal long-term outcomes.\n                  <\/jats:p>","DOI":"10.1038\/s41598-026-52270-8","type":"journal-article","created":{"date-parts":[[2026,5,14]],"date-time":"2026-05-14T07:44:17Z","timestamp":1778744657000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Health-related quality of life and visual function in retinoblastoma survivors with ocular prostheses: a cross-sectional study"],"prefix":"10.1038","volume":"16","author":[{"given":"Beatrice","family":"Cassl\u00e9n","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Richard","family":"Jonasson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marie","family":"Odersj\u00f6","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ylva","family":"Jug\u00e5rd","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kristina Te\u00e4r","family":"Fahnehjelm","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lovisa","family":"Lovmar","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marita Andersson","family":"Gr\u00f6nlund","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2026,5,14]]},"reference":[{"key":"52270_CR1","doi-asserted-by":"publisher","first-page":"21","DOI":"10.1136\/bjo.2008.138750","volume":"93","author":"E Broaddus","year":"2009","unstructured":"Broaddus, E., Topham, A. & Singh, A. D. Incidence of retinoblastoma in the USA: 1975\u20132004. Br. J. Ophthalmol. 93, 21\u201323 (2009).","journal-title":"Br. J. Ophthalmol."},{"key":"52270_CR2","doi-asserted-by":"publisher","first-page":"820","DOI":"10.1073\/pnas.68.4.820","volume":"68","author":"AG Knudson","year":"1971","unstructured":"Knudson, A. G. Jr. Mutation and cancer: statistical study of retinoblastoma. Proc. Natl. Acad. Sci. U S A. 68, 820\u2013823 (1971).","journal-title":"Proc. Natl. Acad. Sci. U S A"},{"key":"52270_CR3","doi-asserted-by":"publisher","first-page":"366","DOI":"10.1136\/jmedgenet-2014-102264","volume":"51","author":"CJ Dommering","year":"2014","unstructured":"Dommering, C. J. et al. RB1 mutation spectrum in a comprehensive nationwide cohort of retinoblastoma patients. J. Med. Genet. 51, 366\u2013374 (2014).","journal-title":"J. Med. Genet."},{"key":"52270_CR4","doi-asserted-by":"publisher","first-page":"1109","DOI":"10.1016\/S0161-6420(01)00562-0","volume":"108","author":"AC Moll","year":"2001","unstructured":"Moll, A. C. et al. Second primary tumors in hereditary retinoblastoma: a register-based study, 1945\u20131997: Is there an age effect on radiation-related risk? Ophthalmology 108, 1109\u20131114 (2001).","journal-title":"Ophthalmology"},{"key":"52270_CR5","doi-asserted-by":"publisher","first-page":"1341","DOI":"10.1001\/jamaophthalmol.2015.3108","volume":"133","author":"DH Abramson","year":"2015","unstructured":"Abramson, D. H., Shields, C. L., Munier, F. L. & Chantada, G. L. Treatment ofl 2015: Agreement and disagreement. JAMA Ophthalmol. 133, 1341\u20131347 (2015).","journal-title":"JAMA Ophthalmol."},{"key":"52270_CR6","doi-asserted-by":"crossref","unstructured":"Goiato, M., de Caxias, F. & Santos, D. Quality of life living with ocular prosthesis. Expert Rev. Ophthalmol. 13, 115\u2013119 (2018).","DOI":"10.1080\/17469899.2018.1503534"},{"key":"52270_CR7","doi-asserted-by":"publisher","first-page":"1482","DOI":"10.4103\/ijo.IJO_2428_20","volume":"69","author":"H Dhingra","year":"2021","unstructured":"Dhingra, H., Arya, D., Taluja, A., Das, S. & Mahajan, A. A study analyzing the health-related quality of life of retinoblastoma survivors in India. Indian J. Ophthalmol. 69, 1482\u20131486 (2021).","journal-title":"Indian J. Ophthalmol."},{"key":"52270_CR8","doi-asserted-by":"publisher","first-page":"65","DOI":"10.1186\/1477-7525-5-65","volume":"5","author":"J van Dijk","year":"2007","unstructured":"van Dijk, J. et al. Health-related quality of life of child and adolescent retinoblastoma survivors in the Netherlands. Health Qual. Life Outcomes. 5, 65 (2007).","journal-title":"Health Qual. Life Outcomes"},{"key":"52270_CR9","doi-asserted-by":"publisher","first-page":"e27623","DOI":"10.1002\/pbc.27623","volume":"66","author":"N Weintraub","year":"2019","unstructured":"Weintraub, N. et al. The impact of monocular vision on motor function and quality of life in survivors of retinoblastoma. Pediatr. Blood Cancer. 66, e27623 (2019).","journal-title":"Pediatr. Blood Cancer"},{"key":"52270_CR10","doi-asserted-by":"publisher","first-page":"e29983","DOI":"10.1002\/pbc.29983","volume":"70","author":"M Morse","year":"2023","unstructured":"Morse, M. et al. Psychosocial outcomes and quality of life among school-age survivors of retinoblastoma. Pediatr. Blood Cancer. 70, e29983 (2023).","journal-title":"Pediatr. Blood Cancer"},{"key":"52270_CR11","doi-asserted-by":"publisher","first-page":"e30479","DOI":"10.1002\/pbc.30479","volume":"70","author":"J Wise","year":"2023","unstructured":"Wise, J. et al. Eye-related quality of life and activities of daily living in pediatric retinoblastoma patients: A single-center, non-controlled, cross-sectional analysis. Pediatr. Blood Cancer. 70, e30479 (2023).","journal-title":"Pediatr. Blood Cancer"},{"key":"52270_CR12","doi-asserted-by":"publisher","first-page":"1433","DOI":"10.4103\/IJO.IJO_2857_23","volume":"72","author":"K Padamandala","year":"2024","unstructured":"Padamandala, K., Vemuganti, G. K., Prasad, M. S. D. & Honavar, S. G. Quality of life of retinoblastoma survivors in tertiary care eye hospital in South India. Indian J. Ophthalmol. 72, 1433\u20131441 (2024).","journal-title":"Indian J. Ophthalmol."},{"key":"52270_CR13","doi-asserted-by":"publisher","first-page":"2004","DOI":"10.4103\/ijo.IJO_1996_20","volume":"69","author":"NK Pehere","year":"2021","unstructured":"Pehere, N. K. & Dutton, G. N. Perceptual visual dysfunction in children\u2014an Indian perspective. Indian J. Ophthalmol. 69, 2004\u20132011 (2021).","journal-title":"Indian J. Ophthalmol."},{"key":"52270_CR14","doi-asserted-by":"publisher","first-page":"477","DOI":"10.1053\/siny.2001.0078","volume":"6","author":"G Dutton","year":"2002","unstructured":"Dutton, G. & Jacobson, L. Cerebral visual impairment in children. Semin. Neonatol. 6, 477\u2013485 (2002).","journal-title":"Semin. Neonatol."},{"key":"52270_CR15","unstructured":"Dutton, G. N. et al. (eds) Structured Clinical History-Taking for Cognitive and Perceptual Visual Dysfunction and for Profound Visual Disabilities Due to Damage to the Brain in Children (2010)."},{"key":"52270_CR16","doi-asserted-by":"publisher","first-page":"2061","DOI":"10.1111\/apa.17315","volume":"113","author":"RT Najim","year":"2024","unstructured":"Najim, R. T., Andersson, S., Tullberg, M. & Andersson Gr\u00f6nlund, M. Quality of life and functional vision in adolescents with surgically treated hydrocephalus in infancy. Acta Paediatr. 113, 2061\u20132071 (2024).","journal-title":"Acta Paediatr."},{"key":"52270_CR17","doi-asserted-by":"publisher","first-page":"170","DOI":"10.1111\/j.1469-8749.2008.03257.x","volume":"51","author":"GN Dutton","year":"2009","unstructured":"Dutton, G. N. Dorsal stream dysfunction\u2019 and \u2018dorsal stream dysfunction plus\u2019: A potential classification for perceptual visual impairment in the context of cerebral visual impairment? Dev. Med. Child. Neurol. 51, 170\u2013172 (2009).","journal-title":"Dev. Med. Child. Neurol."},{"key":"52270_CR18","doi-asserted-by":"publisher","first-page":"800","DOI":"10.1097\/00005650-200108000-00006","volume":"39","author":"JW Varni","year":"2001","unstructured":"Varni, J. W., Seid, M. & Kurtin, P. S. PedsQL 4.0: Reliability and validity of the pediatric quality of life inventory\u2122 version 4.0 generic core scales in healthy and patient populations. Med. Care. 39, 800\u2013812 (2001).","journal-title":"Med. Care"},{"key":"52270_CR19","doi-asserted-by":"publisher","first-page":"547","DOI":"10.1111\/j.1600-0420.2004.00307.x","volume":"82","author":"K Moutakis","year":"2004","unstructured":"Moutakis, K., Stigmar, G. & Hall-Lindberg, J. Using the KM visual acuity chart for more reliable evaluation of amblyopia compared to the HVOT method. Acta Ophthalmol. Scand. 82, 547\u2013551 (2004).","journal-title":"Acta Ophthalmol. Scand."},{"key":"52270_CR20","doi-asserted-by":"publisher","first-page":"611","DOI":"10.1177\/1359105309103580","volume":"14","author":"JW Varni","year":"2009","unstructured":"Varni, J. W. & Limbers, C. A. The PedsQL 4.0 Generic Core Scales Young Adult Version: feasibility, reliability and validity in a university student population. J. Health Psychol. 14, 611\u2013622 (2009).","journal-title":"J. Health Psychol."},{"key":"52270_CR21","first-page":"298","volume":"41","author":"MJ Houliston","year":"1999","unstructured":"Houliston, M. J., Taguri, A. H., Dutton, G. N., Hajivassiliou, C. & Young, D. G. Evidence of cognitive visual problems in children with hydrocephalus: A structured clinical history-taking strategy. Dev. Med. Child. Neurol. 41, 298\u2013306 (1999).","journal-title":"Dev. Med. Child. Neurol."},{"issue":"Pt 3","key":"52270_CR22","doi-asserted-by":"publisher","first-page":"302","DOI":"10.1038\/eye.1996.64","volume":"10","author":"G Dutton","year":"1996","unstructured":"Dutton, G. et al. Cortical visual dysfunction in children: A clinical study. Eye (Lond). 10(Pt 3), 302\u2013309 (1996).","journal-title":"Eye (Lond)"},{"key":"52270_CR23","unstructured":"Raffa, L. Visual Function, Ocular Morphology and Growth\u2013Children Born Moderate-to-Late Preterm (2016)."},{"key":"52270_CR24","doi-asserted-by":"publisher","first-page":"150","DOI":"10.1002\/pst.433","volume":"10","author":"PC Austin","year":"2011","unstructured":"Austin, P. C. Optimal caliper widths for propensity-score matching when estimating differences in means and differences in proportions in observational studies. Pharm. Stat. 10, 150\u2013161 (2011).","journal-title":"Pharm. Stat."},{"key":"52270_CR25","doi-asserted-by":"publisher","first-page":"116","DOI":"10.1177\/1043454219888805","volume":"37","author":"PJ Belson","year":"2020","unstructured":"Belson, P. J., Eastwood, J. A., Brecht, M. L., Hays, R. D. & Pike, N. A. A review of literature on health-related quality of life of retinoblastoma survivors. J. Pediatr. Oncol. Nurs. 37, 116\u2013127 (2020).","journal-title":"J. Pediatr. Oncol. Nurs."},{"key":"52270_CR26","doi-asserted-by":"publisher","first-page":"1287","DOI":"10.1002\/pbc.25982","volume":"63","author":"A Batra","year":"2016","unstructured":"Batra, A. et al. Parents\u2019 perspective of quality of life of retinoblastoma survivors. Pediatr. Blood Cancer. 63, 1287\u20131289 (2016).","journal-title":"Pediatr. Blood Cancer"},{"key":"52270_CR27","doi-asserted-by":"publisher","first-page":"590","DOI":"10.1002\/pbc.22790","volume":"56","author":"N Weintraub","year":"2011","unstructured":"Weintraub, N., Rot, I., Shoshani, N., Pe\u2019er, J. & Weintraub, M. Participation in daily activities and quality of life in survivors of retinoblastoma. Pediatr. Blood Cancer. 56, 590\u2013594 (2011).","journal-title":"Pediatr. Blood Cancer"},{"key":"52270_CR28","first-page":"342","volume":"39","author":"PJ Belson","year":"2022","unstructured":"Belson, P. J. et al. Health-related quality of life in adolescent and young adult retinoblastoma survivors. J. Pediatr. Hematol. Oncol. Nurs. 39, 342\u2013357 (2022).","journal-title":"J. Pediatr. Hematol. Oncol. Nurs."},{"key":"52270_CR29","doi-asserted-by":"publisher","first-page":"313","DOI":"10.1002\/pbc.25781","volume":"63","author":"A Batra","year":"2016","unstructured":"Batra, A. et al. Quality of life assessment in retinoblastoma: A cross-sectional study of 122 survivors from India. Pediatr. Blood Cancer. 63, 313\u2013317 (2016).","journal-title":"Pediatr. Blood Cancer"},{"key":"52270_CR30","unstructured":"Simeonov, L. Impact of Therapy on Quality of Life in Patients Treated for Retinoblastoma [Phd Thesis] (University of Lausanne, 2018)."},{"key":"52270_CR31","doi-asserted-by":"publisher","first-page":"389","DOI":"10.32641\/andespediatr.v95i4.5045","volume":"95","author":"MI Arteaga Henr\u00edquez","year":"2024","unstructured":"Arteaga Henr\u00edquez, M. I. et al. Health related quality of life in retinoblastoma patients. Andes Pediatr. 95, 389\u2013396 (2024).","journal-title":"Andes Pediatr."},{"key":"52270_CR32","doi-asserted-by":"publisher","first-page":"642","DOI":"10.1136\/bjo.2010.182386","volume":"95","author":"RK Chadha","year":"2011","unstructured":"Chadha, R. K. & Subramanian, A. The effect of visual impairment on quality of life of children aged 3\u201316 years. Br. J. Ophthalmol. 95, 642\u2013645 (2011).","journal-title":"Br. J. Ophthalmol."},{"key":"52270_CR33","doi-asserted-by":"publisher","first-page":"203636132413061","DOI":"10.1177\/20363613241306191","volume":"16","author":"S Barnett","year":"2024","unstructured":"Barnett, S. et al. Reading level, acuity, and speed evaluation among retinoblastoma survivors: A prospective case series. Rare Tumors. 16, 20363613241306191 (2024).","journal-title":"Rare Tumors"},{"key":"52270_CR34","doi-asserted-by":"publisher","first-page":"188e1","DOI":"10.1016\/j.jaapos.2023.06.003","volume":"27","author":"M Reynolds","year":"2023","unstructured":"Reynolds, M. et al. Characterization of vision in pediatric retinoblastoma survivors beyond visual acuity. J. Am. Assoc. Pediatr. Ophthalmol. Strabismus. 27, 188e1\u2013e6 (2023).","journal-title":"J. Am. Assoc. Pediatr. Ophthalmol. Strabismus"},{"key":"52270_CR35","doi-asserted-by":"publisher","first-page":"169","DOI":"10.1111\/j.1600-0420.2005.00615.x","volume":"84","author":"MA Gr\u00f6nlund","year":"2006","unstructured":"Gr\u00f6nlund, M. A., Andersson, S., Aring, E., H\u00e5rd, A-L. & Hellstr\u00f6m, A. Ophthalmological findings in a sample of Swedish children aged 4\u201315 years. Acta Ophthalmol. Scand. 84, 169\u2013176 (2006).","journal-title":"Acta Ophthalmol. Scand."},{"key":"52270_CR36","doi-asserted-by":"publisher","first-page":"662","DOI":"10.1111\/aos.14424","volume":"98","author":"B Cassl\u00e9n","year":"2020","unstructured":"Cassl\u00e9n, B. et al. Visual function and quality of life in children and adolescents with anophthalmia and microphthalmia treated with ocular prosthesis. Acta Ophthalmol. 98, 662\u2013670 (2020).","journal-title":"Acta Ophthalmol."},{"key":"52270_CR37","doi-asserted-by":"publisher","first-page":"e115","DOI":"10.1111\/aos.14868","volume":"100","author":"E Gyllencreutz","year":"2022","unstructured":"Gyllencreutz, E., Aring, E., Landgren, V., Landgren, M. & Gr\u00f6nlund Marita, A. Visual perception problems and quality of life in young adults with foetal alcohol spectrum disorders. Acta Ophthalmol. 100, e115\u2013e21 (2022).","journal-title":"Acta Ophthalmol."},{"key":"52270_CR38","doi-asserted-by":"publisher","first-page":"57","DOI":"10.1016\/j.exer.2018.09.013","volume":"183","author":"KR Kelly","year":"2019","unstructured":"Kelly, K. R., Gallie, B. L. & Steeves, J. K. E. Early monocular enucleation selectively disrupts neural development of face perception in the occipital face area. Exp. Eye Res. 183, 57\u201361 (2019).","journal-title":"Exp. Eye Res."}],"container-title":["Scientific Reports"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.nature.com\/articles\/s41598-026-52270-8","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.nature.com\/articles\/s41598-026-52270-8.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.nature.com\/articles\/s41598-026-52270-8.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,14]],"date-time":"2026-05-14T08:11:40Z","timestamp":1778746300000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.nature.com\/articles\/s41598-026-52270-8"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,5,14]]},"references-count":38,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2026,12]]}},"alternative-id":["52270"],"URL":"https:\/\/doi.org\/10.1038\/s41598-026-52270-8","relation":{},"ISSN":["2045-2322"],"issn-type":[{"value":"2045-2322","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,5,14]]},"assertion":[{"value":"14 July 2025","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"4 May 2026","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"14 May 2026","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"The authors declare no competing interests.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}},{"value":"The study was approved by the Research Ethics Board at the University of Gothenburg (Dnr 951-13, approved March 8, 2014; amendment Dnr T156-14, approved June 17, 2014) and was conducted according to the Declaration of Helsinki. The individuals with RB and their parents were informed of the study and written informed consent was obtained from all participants before the study took place. For participants aged 15\u201317 years, both the child and guardian completed a written consent form.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}}],"article-number":"15174"}}