Krishansri Padamandala^1,2*, Geeta K Vemuganti^1,3, Surya Durga Prasad M¹, Santosh G Honavar⁴

¹School of Medical Sciences, University of Hyderabad, Hyderabad (Telangana), India
²Department of Optometry, School of Allied and Healthcare Sciences, Mallareddy University, Hyderabad (Telangana), India
³LV Prasad Eye Institute, KAR Campus, Banjarahills, Hyderabad (Telangana), India
⁴Ocular Oncology and Oculoplasty, Centre for Sight Eye Hospital, Hyderabad (Telangana), India

*Corresponding Author: Krishansri Padamandala, Assistant Professor, Department of Optometry, School of Medical Sciences, University of Hyderabad, Hyderabad (Telangana), India.

Received: August 04, 2025; Published: August 19, 2025

Abstract

The primary objective of this Scoping review was to evaluate and consolidate data about the quality of life (QoL) experienced by individuals who have survived retinoblastoma, a very rare form of eye cancer that primarily affects children. The study encompassed a total of 107 articles, comprising a variety of article types such as original research articles, review articles, randomized controlled studies, and experimental studies. The majority of the studies encompassed either children or parents, with two studies conducted in India incorporating both parents and children. The most frequently utilized questionnaires for assessing the quality of life (QoL) in this study included the Peds Qol 4.0 (n = 5), the Short form 36 (SF-36) life questionnaire (n = 2), the Kids screen self-report (n = 1) 5%, the Child and Family follow-up (CFFS) survey (n = 1) 5%, the Child Health Questionnaire (CHQ) 5%, the Cancer therapy general FACT-g qnr 5%, medical charts, and thematic analysis (n = 1) 5%, the National eye institute visual field questionnaire (NEIFQ) 5%, treatment-based interventions, and review studies (n = 3) 17.6%. The predominant body of research has primarily concentrated on examining the physical well-being of survivors, their psychological functioning, as well as their educational and employment outcomes. However, comparatively less attention has been given to investigating the impact on family dynamics and the economic circumstances of survivors. Cases of enucleation and visual acuity below 6/18 in the better eye were found to have a detrimental effect on Health-Related Quality of Life (HRQoL).

References

1. “Retinoblastoma - Symptoms and causes Mayo Clinic” (2023).
2. National Academies of Sciences E., et al. “The Impact of Vision Loss Making Eye Health a Population Health Imperative: Vision for Tomorrow”. National Academies Press (US) (2016).
3. The Will to Live | Surviving Cancer | Stanford Medicine (2023).
4. Dimaras H., et al. “Retinoblastoma”. Nature Reviews Disease Primers 1 (2015): 15021.
5. Gottlieb M., et al. “The scoping review: A flexible, inclusive, and iterative approach to knowledge synthesis”. AEM Education Train3 (2021): e10609.
6. “Prevalence vs impact: a mixed methods study of survivorship issues in colorectal cancer”. SpringerLink (2023).
7. van Dijk J., et al. “Quality of life of adult retinoblastoma survivors in the Netherlands”. Health Quality Life Outcomes 5 (2007): 30.
8. Belson PJ., et al. “A Review of Literature on Health-Related Quality of Life of Retinoblastoma Survivors”. Journal of Pediatric Oncology Nursing2 (2020): 116-127.
9. Janic A., et al. “Patient-reported outcome measures for retinoblastoma: a scoping review”. Journal of Patient-Report Outcomes 4 (2020): 66.
10. Batra A., et al. “Quality of Life Assessment in Retinoblastoma: A Cross-Sectional Study of 122 Survivors from India”. Pediatric Blood Cancer2 (2016): 313-317.
11. Dhingra H., et al. “A study analyzing the health-related quality of life of retinoblastoma survivors in India”. Indian Journal of Ophthalmology6 (2021): 1482-1486.
12. Zhang L., et al. “Quality of life in children with retinoblastoma after enucleation in China”. Pediatric Blood Cancer 7 (2018): e27024.
13. Padamandala K., et al. “Investigating the Quality of Life of Retinoblastoma Survivors: An Initial Exploration”. Journal of Cancer Science and Clinical Therapeutics2 (2023).
14. “Thriving Beyond Diagnosis: Quality of Life in Retinoblastoma Survivors QoL Rb India study”. IOVS | ARVO Journals (2024).
15. Padamandala, Krishnasri., et al. “Quality of life of Retinoblastoma survivors in tertiary care eye hospital in South India”. Indian Journal of Ophthalmology (2024).
16. Weintraub N., et al. “The impact of monocular vision on motor function and quality of life in survivors of retinoblastoma”. Pediatric Blood Cancer5 (2019): e27623.
17. Soliman SE., et al. “Socioeconomic and psychological impact of treatment for unilateral intraocular retinoblastoma”. Journal Français d'Ophtalmologie6 (2015): 550-558.
18. Banerjee SC., et al. “Impact of enucleation on adult retinoblastoma survivors’ quality of life: A qualitative study of survivors’ perspectives”. Palliat Support Care3 (2020): 322-331.
19. Friedman DN., et al. “Vision-Targeted Health-Related Quality of Life in Adult Survivors of Retinoblastoma”. JAMA Ophthalmology 6 (2018): 637-641.
20. Tomar AS., et al. “Global Retinoblastoma Treatment Outcomes: Association with National Income Level”. Ophthalmology5 (2021): 740-753.
21. Wright H. “A Thesis Presented to the Faculty of California State University, Stanislaus”. (2020).
22. Chawla B., et al. “Conservative treatment modalities in retinoblastoma”. Indian Journal of Ophthalmology9 (2013): 479.
23. Ford JS., et al. “Psychosocial Outcomes in Adult Survivors of Retinoblastoma”. Journal of Clinical Oncology31 (2015): 3608-3614.
24. Belson P. “Health-Related Quality of Life in Adolescent and Young Adult Retinoblastoma Survivors UCLA”. (2021).
25. Salibasic M., et al. “The Quality of Life and Degree of Depression of Patients Suffering from Breast Cancer”. Medical Archives3 (2018): 202.
26. Korn AR., et al. “Social determinants of health and cancer screening implementation and outcomes in the USA: a systematic review protocol”. System Review1 (2022): 117.
27. Shields CL and Shields JA. “Diagnosis and management of retinoblastoma”. Cancer Control: Journal of the Moffitt Cancer 5 (2004): 317-327.
28. Belson PJ., et al. “Health-Related Quality of Life in Adolescent and Young Adult Retinoblastoma Survivors”. Journal of Pediatric Hematology/Oncology Nursing (2022): 27527530221073766.
29. Nicolussi AC., et al. “Health-related quality of life of cancer patients undergoing chemotherapy”. Rev Rede Enferm Nordeste1 (2014).
30. Abramson DH., et al. “Advanced Unilateral Retinoblastoma: The Impact of Ophthalmic Artery Chemosurgery on Enucleation Rate and Patient Survival at MSKCC”. PLoS ONE12 (2015): e0145436.
31. Wiley JF., et al. “Quality of Life and Cancer-Related Needs in Patients with Choroidal Melanoma”. British Journal of Ophthalmology11 (2013): 10.
32. Rajeshuni N., et al. “Racial, Ethnic, and Socioeconomic Disparities in Retinoblastoma Enucleation: A Population-Based Study, SEER 18 2000-2014”. American Journal of Ophthalmology 207 (2019): 215-223.
33. Truong B., et al. “Ethnic, Racial, and Socioeconomic Disparities in Retinoblastoma”. JAMA Pediatrics12 (2015): 1096-104.
34. Garza-Garza LA., et al. “Challenge of Retinoblastoma in Mexico in 2020: Perspectives and Solutions”. Journal of Ophthalmology (2020): 1953602.
35. Shields CL and Shields JA. “Retinoblastoma management: advances in enucleation, intravenous chemoreduction, and intra-arterial chemotherapy”. Current Opinion on Ophthalmology3 (2010): 203-212.
36. “The Global Retinoblastoma Outcome Study: a prospective, cluster-based analysis of 4064 patients from 149 countries”. Lancet Global Health8 (2022): e1128-1140.
37. Seth R., et al. “Long-term follow-up of retinoblastoma survivors: Experience from India”. South Asian Journal of Cancer4 (2017): 176-179.
38. KHORRAMI-NEJAD M., et al. “The Impact of Visual Impairment on Quality of Life”. Medical Hypothesis, Discovery and Innovation in Ophthalmology 3 (2016): 96-103.
39. Shrestha A., et al. “Quality of life versus length of life considerations in cancer patients: A systematic literature review”. Psychooncology 7 (2019): 1367-1380.
40. Harandi TF., et al. “The correlation of social support with mental health: A meta-analysis”. Electron Physician9 (2017): 5212-5222.
41. Gu X., et al. “Publication Trends of Research on Retinoblastoma During 2001-2021: A 20-Year Bibliometric Analysis”. Frontiers in Medicine 8 (2021): 675703.
42. Panesar SS., et al. “Comparison of reports of randomized controlled trials and systematic reviews in surgical journals: literature review”. Journal of the Royal Society of Medicine9 (2006): 470-472.
43. van Dijk J., et al. “Restrictions in daily life after retinoblastoma from the perspective of the survivors”. Pediatric Blood Cancer1 (2010): 110-115.
44. Batra A., et al. “Parents’ Perspective of Quality of Life of Retinoblastoma Survivors”. Pediatric Blood Cancer7 (2016): 1287-1289.
45. Al Qahtani M., et al. “Health related quality of life of patients treated with bilateral enucleation for retinoblastoma”. European Journal of Ophthalmology 4 (2022): 1960-1965.
46. Selistre SGA., et al. “Retinoblastoma in a pediatric oncology reference center in Southern Brazil”. BMC Pediatrics1 (2016): 48.
47. Friedman DN., et al. “Chronic medical conditions in adult survivors of retinoblastoma: Results of the Retinoblastoma Survivor Study”. Cancer 2 122.5 (2016): 773-781.
48. Bisht S., et al. “Impact of yoga based lifestyle intervention on psychological stress and quality of life in the parents of children with retinoblastoma”. Annals of Neuroscience 2 (2019): 66-74.

Citation

Citation: Krishansri Padamandala., et al. “The Unseen Burden: A Scoping Review of Quality of Life in Retinoblastoma-Affected Lives".Acta Scientific Ophthalmology 8.9 (2025): 03-15.

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Copyright: © 2025 Krishansri Padamandala., et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.