Retinoblastoma (RB) is a form of eye cancer predominantly seen in babies and young children. The projections of burden of RB in India reveal that at least 1,000 children are affected by it annually.1 Though the disease burden is high, there is limited information on the knowledge and awareness levels, access, and barriers to RB services. If detected early and treated appropriately, RB can be cured with a positive life prognosis as well as possibly salvaging the eye and vision. Evidence suggests that patient survival is >95% in high-income countries, but <30% globally.2,3 Evidence from India suggests a high-cure rate of over 90% and a 5-year survival rate of 65%.4,5
With an aim to facilitate and improve access to RB services, as well as build capacity amongst healthcare providers and to generate awareness in the communities, Mission for Vision (MFV) with the support from the Wen Giving Foundation (WGF) and in partnership with HV Desai Eye Hospital (HVDEH), Pune launched Mission Jeevan in March 2021.6 On the occasion of World Retinoblastoma Week, we reflect upon the progress made and explore the way forward as we plan to expand its scope and scale.
Objectives Of Mission Jeevan
- To screen and diagnose children with RB at its associated Oncology units.
- To provide treatment and financial aid for children diagnosed with RB or through referral at another associated oncology unit.
- To counsel children and their families undergoing treatment for RB.
- To create awareness about RB through capacity building of medical practitioners and awareness amongst the general population.
Profile of the patients and their caregivers
A total of 10 children, aged between one and five years are undergoing treatment for RB at HVDEH, since the inception of Mission Jeevan. Over half of these children had RB in the left eye, while only one child had bilateral RB. Most fathers had a private job and the median monthly household income was INR. 12,000 (USD 161.8) (Range: INR. 6,000 (USD 80.8) – 18,000 (USD 242.4)).
Clinical profile of patients
None of the patients reported a previous history of either ocular or other cancers in the family. The most common symptom reported prior to getting a medical diagnosis was ‘white reflex in the affected eye(s)’, followed by ‘white reflex accompanied by squinting eyes’ and ‘pain, redness and unable to open the eye’. As per the International Intraocular Retinoblastoma Classification (IIRC) scheme and Intraocular Classification of Retinoblastoma (ICRB),7-9 a total of 3 children were classified under group-2, 2 children under group-4 and one each for groups 3 and 5, respectively, in the affected eye. Upon examination, 6 children were found to have poor visual prognosis and 7 had good life prognosis.
Capacity building and awareness
To enhance the skill set of ophthalmic professionals, one technical webinar was conducted by experts at HVDEH during the past year. In addition to this, awareness activities in the communities were planned; videos and blogs were published on this topic.
Learnings and Challenges
Based on internal evaluations of activities, the following challenges emerged that need attention:
- Delayed case presentation was a matter of concern. Early identification of RB cases and specifically motivating parents for treatment was a challenge as it required multiple follow-up visits with parents.
- Inadequate knowledge about RB among the healthcare providers was a concern.
- Treatment compliance and lost-to-follow-up (LTF) was an issue. Though the treatment costs were covered as part of Mission Jeevan, patients often incurred indirect expenses such as travel, food, and accommodation during their visit to the hospital for treatment, leading to LTF.
As we plan to expand Mission Jeevan, the immediate and near-term goals is to provide complete treatment to the existing patients and to bring those who were LTF back into the scope of the intervention. Moving forward, providing greater emphasis on community outreach activities is needed so as to spread awareness and improve access to services. Similarly, increasing the capacity-building activities amongst healthcare professionals to effectively deal with RB cases would be given due impetus.
To conclude, Mission Jeevan intervention has achieved most of its objectives. Investing further into life-and-sight-saving initiatives such as Mission Jeevan and expanding its scope to diverse geographies will have clear epidemiological, economic, and humanistic benefits.
- Rangamani S, Kumar KS, Manoharan N, et al. Paediatric retinoblastoma in India: evidence from the National Cancer Registry Programme. Asian Pac J Cancer Prev. 2015;16: 4193–4198.
- Dimaras H, Corson TW, Cobrinik D, et al. Retinoblastoma. Nat Rev Dis Primers. 2015; 1:15021.
- Canturk S, Qaddoumi I, Khetan V, et al. Survival of retinoblastoma in less-developed countries impact of socioeconomic and health-related indicators. Br J Ophthalmol. 2010;94(11):1432-6.
- Kumar A, Moulik NR, Mishra RK, et al. Causes, outcome and prevention of abandonment in retinoblastoma in India. Pediatr Blood Cancer. 2013;60(5):771-5.
- Chawla B, Hasan F, Azad R, et al. Clinical presentation and survival of retinoblastoma in Indian children. Br J Ophthalmol. 2016;100(2):172-8.
- Mission for Vision. Mission Jeevan. Mission for Vision, Mumbai. Available from: http://www.missionforvision.org.in/mission-jeevan [Last accessed 26 April 2022].
- Murphree LA. Intraocular retinoblastoma: the case for a new group classification. Ophthalmol Clin North Am. 2005;18:41–53.
- Shields CL, Mashayekhi A, Au AK, et al. The International Classification of Retinoblastoma Predicts Chemoreduction Success. Ophthalmology 2006;113:2276–2280.
- Scelfo C, Francis JH, Khetan V, Jenkins T, Marr B, Abramson DH. et al. An international survey of classification and treatment choices for group D retinoblastoma. Int J Ophthalmol 2017;10:(6):961–967.
As part of Focus on Child Eye Health, a piece by Mission for Vision on their work to treat retinoblastoma. Focus on Child Eye Health engages some of the world’s best and brightest thought leaders throughout the year to share knowledge, inspire action, discuss ideas and push Child Eye Health to the forefront of pressing development issues. It is supported by CooperVision.
Image on top: Shrikant Ayyangar, Mission for Vision