A questionnaire based review of long-term follow-up programs for survivors of childhood cancer in Canada

Abstract

Background. Major advances have been made in the treatment of childhood cancer; however, survivors of childhood cancer are at increased risk for morbidity and mortality. There is little literature regarding available long-term follow-up programs for survivors of childhood cancer. Procedure. In March 2007, 16 surveys were sent to pediatric hematology/oncology programs across Canada to determine what programs were available for survivors of childhood cancer, and the nature of such programs. Results. Of 15 participating centers, 13 (87%) have multi-disciplinary programs for the long-term follow-up of pediatric cancer survivors. Research databases were documented in 9/15 (60%) of centers to document late effects. Dedicated programs for adult survivors of childhood cancer were established in 8/15 (53%) of centers. Access to subspecialty care for survivors was rated as quite good. Concerns were raised by many participants about patients being lost to follow-up. Respondents indicated that primary care physicians appear to be underrepresented within dedicated long-term follow-up programs. Conclusion. Long-term follow-up programs for survivors of childhood cancer are available in 87% of Canadian pediatric oncology centers. While programs reported good access to care for childhood survivors, many adult survivors of childhood cancer have more limited timely access to services and patients are often lost to follow-up. New models of care incorporating primary care physicians are necessary due to growing numbers of survivors. © 2008 Wiley-Liss, Inc.