Collaborative guidelines promotes optimal care for all children, families and survivors.
Globally, the retinoblastoma research community cannot agree on how to best manage this complex eye cancer. As a result, many children and adult survivors receive sub-optimal care. We support the development and use of evidence-based best practice guidelines to encourage common standards of care and drive valuable research forward.
Advances in retinoblastoma care in developed countries over the last half century have increased survival, improved visual outcomes and reduced healthcare costs. However, there remains no agreement on the best approaches to screening, referral, staging, treatment, genetic counseling and testing, follow-up and supportive care.
Without clearly defined standards of care, many children and adult survivors receive sub-optimal care. Families are confused by the array of treatment options and overwhelmed by the decisions they have to make. Survivors at high risk of second primary cancers feel unsupported and demoralized by the lack of structured ongoing care.
We support national collaborative guidelines development, to achieve optimal care for all children affected by retinoblastoma and their families..
Best practice guidelines encourage consistent, high quality care for all patients. Recommendations are based on available scientific evidence and consensus. Guidelines therefore also stimulate research in areas where knowledge and scientific evidence is lacking.
The world’s first guidelines for retinoblastoma care were published in the Canadian Journal of Ophthalmology (December 2009 issue). They were developed by the Canadian National Retinoblastoma Strategy (CNRbS) Group, a multidisciplinary panel of retinoblastoma specialists, parents and survivors.
Using the Canadian Guidelines as a model, the Kenya National Retinoblastoma Strategy group developed guidelines appropriate for the resource-limited setting. The Kenyan National Retinoblastoma Care Guidelines were adopted by the government in September 2014 and their recommendations are now being implemented across the country.
Chapters cover referral, screening and diagnosis, genetics, treatment, follow up, psychosocial support and access to care, organisation of care, future research, and advocacy. Consensus recommendations are based on published scientific evidence or clinical experience where evidence was not available. The Guidelines were reviewed by an international panel of retinoblastoma experts before publication.
These guidelines help educate healthcare workers, facilitate prompt referral to appropriate care, increase collaboration between treatment facilities and ensure the highest possible quality of care. They will be reviewed regularly to ensure the recommendations remain relevant and up-to-date with scientific evidence.
The Canadian and Kenyan Guidelines serve as a cost-effective national care model that can be adapted for use in diverse regions of the world. They can define expected standards of care and ultimately stimulate improved survival and vision outcomes for children.
Our Kenyan National Retinoblastoma Strategy tests the value of guidelines in developing countries. We hope that by standardizing retinoblastoma management around the world, all affected children, survivors and families will have equal access to best possible care, regardless of personal circumstances.
