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. 2009 Jul;14(6):375-8.

A cross-Canada survey of clinical programs for the care of survivors of cancer in childhood and adolescence

Svetlana Ristovski-Slijepcevic  1 , Ronald Barr, Mark Bernstein, Paul C Nathan
Affiliations

A cross-Canada survey of clinical programs for the care of survivors of cancer in childhood and adolescence

Svetlana Ristovski-Slijepcevic et al. Paediatr Child Health. 2009 Jul.

Abstract
in English, French

Background: More than 80% of children who have been recently diagnosed with cancer will survive for five years or more. A majority of these survivors are at risk for developing one or more long-term sequelae of their therapy. Thus, they all require specialized medical care that is focused on their specific risks.

Methods: A survey of informants from all 17 paediatric cancer programs in Canada was conducted to determine the care offered to survivors of childhood cancer, both during their paediatric and adolescent years, as well as after they transition to adulthood.

Results: Sixteen informants representing all 17 centres responded to the survey by telephone or e-mail. Twelve of the 17 centres (71%) had a formal program or clinic dedicated to the care of survivors during their paediatric and adolescent years, while the remaining centres cared for survivors in their acute care oncology clinics. However, only six of 17 centres (35%) had access to a formal program for survivors once they reach adulthood. Fifteen of the 17 centres (88%) adhered to published long-term follow-up guidelines, and 13 of 17 centres (76%) provided a treatment summary and/or a survivorship care plan to each survivor before their transfer out of paediatric care.

Conclusion: Despite the centralization of paediatric oncology care within 17 specialist centres and the availability of universal health care, many Canadian survivors of childhood cancer do not have access to clinics specializing in long-term risk-based survivor care, and this access further decreases once they reach adulthood.

HISTORIQUE: Plus de 80 % des enfants qui ont récemment reçu un diagnostic de cancer survivront au moins cinq ans. La majorité de ces survivants risquent d’acquérir au moins une séquelle à long terme de leur thérapie. Ils ont donc tous besoin de soins médicaux spécialisés axés sur les risques qui leur sont propres.

MÉTHODOLOGIE: On a mené une enquête auprès des répondants des 17 centres d’oncologie pédiatrique du Canada pour déterminer les soins offerts aux survivants du cancer infantile, tant pendant leur enfance que leur adolescence, ainsi qu’après leur transition à l’âge adulte.

RÉSULTATS: Seize répondants, représentant les 17 centres, ont répondu à l’enquête par téléphone ou par courriel. Douze de ces centres (71 %) disposaient d’un programme officiel ou d’une clinique voués aux soins des survivants pendant l’enfance ou l’adolescence, tandis que les autres s’occupaient des survivants dans le cadre de leur clinique d’oncologie. Cependant, seulement six des 17 centres (35 %) avaient accès à un programme officiel destiné aux survivants après qu’ils aient atteint l’âge adulte. Quinze des 17 centres (88 %) respectaient des lignes directrices de suivi à long terme, tandis que 13 (76 %) fournissaient un sommaire de traitement ou un plan de soins de survie à chaque survivant avant leur transfert hors des soins pédiatriques.

CONCLUSION: Malgré la centralisation des soins d’oncologie pédiatrique dans les 17 centres de spécialité et l’accessibilité aux soins de santé universels, de nombreux survivants canadiens au cancer infantile n’ont pas accès à des cliniques spécialisées dans les soins des risques à long terme des survivants, et cet accès diminue encore plus à l’âge adulte.

Keywords: Cancer; Health care delivery; Long-term effects.

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