Survey of childhood cancer survivors who stopped follow-up physician visits

Abstract

Background: Childhood cancer cure rates have increased remarkably; however, survivors face an increased risk of morbidity and mortality. Survivors may benefit from anticipatory guidance and periodic surveillance to minimize morbidity and mortality.

Methods: Subjects included 114 5-year survivors of childhood cancer who were diagnosed and treated in three hospitals in Nagoya between 1975 and 2001 and who stopped follow-up physician visits during the preceding 2 years. We conducted a survey of their socioeconomic status, knowledge about their diagnosis and late effects of treatment received, and current hospital attendance patterns.

Results: Eighty-eight of 114 subjects replied. Sixty-six survivors knew about their disease, but only 26 knew about possible late effects of cancer treatment. Although 78 respondents indicated they were healthy and had no trouble in their daily lives, 46 had at least one chronic condition. In response to the question regarding why they did not visit the hospital regularly, many subjects responded that the physician-in-charge told them they did not need to visit the hospital anymore; others thought it was unnecessary to consult a physician because they were in good health.

Conclusions: Some cancer survivors who stop follow-up physician visits may still be suffering from cancer-related illnesses. Both survivor-related and physician-related barriers contribute to cancer survivors stopping follow-up physician visits. To ensure that survivors undergo appropriate follow-up visits, it is necessary to educate survivors, their families, and medical staff about the late effects of cancer and its treatment and the importance of long-term follow up.