Background: Continuum of care is an important concern for childhood cancer survivors. Studies from high-income countries indicate a significant development in services to these survivors. Similar information is unavailable from India. Methods: An online survey form was developed and sent to 86 centers. Data were collected over a 6-month period in 2017. Results: Fifty nine centers responded (44.1% private sector, 33.9% public, and 22.0% charitable trust). The services are mainly provided (91%) within routine oncology clinics. There is no upper age limit (61%) or time period limit (63%) for follow-up at most of the centers. The major barriers for follow-up are distance, lack of knowledge, lack of adequate facilities, and patient priority for follow-up. Conclusion: This survey provides baseline information on current service provided to childhood cancer survivors in India. There is a need to inform, educate, and sensitize the survivor and their family as well as improving services.
Purpose:
Retinoblastoma (RB) is the commonest intraocular tumor in children. Despite high cure rates, data on health-related quality of life (HRQoL) of RB survivors are limited. This study aimed to analyze parent's perspective and self-report of HRQoL of RB survivors, using healthy siblings as controls. It also evaluated the impact of socio-economic status (SES), gender, disease laterality, treatment modality, duration since diagnosis, and visual outcomes, on HRQoL.
Methods:
Ninety-two RB survivors were enrolled in this observational, cross-sectional questionnaire-based study conducted at a tertiary care center. QoL was analyzed in four dimensions: physical, emotional, social, and school, using both self-report (for children >6 years) and parent proxy report (for children 2–18 years) using Pediatric Quality of Life Inventory™ (PedsQL™) 4.0 Generic Core Scale. Seventy-seven healthy siblings served as controls.
Results:
The mean age of both cohorts was 5.7 years. Thirty-six (39%) patients had bilateral RB. Of the 92 survivors, 43 (47%) had undergone enucleation. The HRQoL of RB survivors was significantly lower compared to sibling controls (
P
< 0.01) in all four domains, the physical domain being most affected followed by social domain. Parents reported an inferior QoL than patient's self-report. Vision <6/18 in the best eye and enucleation had a negative impact on HRQoL whilst gender, disease laterality, duration since diagnosis and SES had no impact.
Conclusion:
QoL assessment is often neglected but an important aspect of survivorship. Results of our study will help in formulating awareness of the domains affected and allow timely advocacy of initiatives for addressing each issue individually. Remedial measures aimed at optimizing QoL should be incorporated as part of their rehabilitation.
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