Enhancing Health Care of Survivors of Childhood Cancer With Tailored Education

The high-risk status of many survivors of childhood cancer has been well described, with long-term risks including serious cardiovascular events, infertility and gonadal dysfunction, second cancers, and premature mortality. Fortunately, the occurrence or severity of many late effects of the cancer and cancer therapy can be mitigated with preventive and proactive risk-based health care. One of the greatest barriers to lifelong risk-based care, however, has been the very nature of late effects. They consist of a wide array of acute and chronic diseases that can occur decades after the cancer. Indeed, survivors often characterize this experience as being blindsided as they were cruising along in life. This paradigm contrasts with most chronic diseases of childhood in which the child who becomes an adult still has the same disease, eg, diabetes or cystic fibrosis, and the same organs are at risk. Not surprisingly, studies have shown that survivors of childhood cancer are frequently unaware of the details of their cancer therapy and, therefore, are unaware of their personal risks, including risks for several serious outcomes. Knowledge of one’s cancer therapy and the associated risks is the essential first step in attaining lifelong risk-based health care. Therefore, targeted health education of both the maturing child and the family are foundational in this process. Of note, education of survivors of childhood cancer and their parents greatly contrasts with that delivered to children with a chronic disease. Children with diabetes and their parents are instructed about how elevated blood glucose levels affect the body; about warning signs of hypoglycemia and hyperglycemia; and about why good blood glucose control is important for the health of several organs, including the eyes, heart, and kidneys. This type of education is then periodically reinforced as the growing child experiences hypoglycemic or hyperglycemic episodes. In contrast, many of the health problems that a survivor of childhood cancer develops will not become clinically apparent for 10 or 20 years after the cancer therapy. Examples include late-onset heart failure after anthracycline therapy, progressive chronic kidney disease after ifosfamide treatment, and second solid tumors after radiotherapy. Two intuitive terms frequently used in research are important in this education process: knowledge translation and knowledge transfer. Landier et al have been at the forefront in the translation of medical jargon into plain language and in the development of Health Links, which are educational aids for survivors of childhood cancer and their families. In the article that accompanies this editorial, Landier et al report the results of a pragmatic, single-arm intervention aimed at transferring this knowledge to survivors of childhood cancer and their families. Their findings have practice-changing implications. First, they confirmed findings from previous studies showing that the vast majority of survivors of childhood cancer, regardless of their age at the time of inquiry, are unaware of their health risks. In their study, before any educational intervention by the clinicians, approximately a third (38%) of the survivors were aware of their health risks. Next, they provided tailored education as part of the routine annual evaluation. By three visits, the percentage of survivors who were aware of their risks had nearly doubled to 66%. This is tremendous progress, and it shows that the theory works in practice. And, not only does it work, but also only three visits are needed to achieve the maximal effect from this cost-efficient approach. For most topics—including cardiac, pulmonary, and thyroid disease and bone disorders—this near-doubling of awareness held steady. Those with the lowest level of awareness experienced the steepest gains over time. For some topics, such as fertility, the baseline awareness was high enough that a ceiling effect occurred with the education. By contrast, for renal disease, little improvement in awareness was observed over time. This latter finding is important because many cancer therapies affect long-term renal function. In such cases, simple preventive strategies, such as avoidance of chronic nonsteroidal anti-inflammatory drugs, can be implemented. Although the study had many strengths, several questions remain. Factors associated with a lower baseline level of awareness were reported, but it would have been informative to identify factors associated with a smaller gain in awareness. These might include age of the survivor, their sex, their education level attained, and so on. In addition, whereas targeted education worked well, almost a third of survivors remained unaware of their personal risks even after repeated visits. To develop interventions aimed at this subgroup, it is imperative to better understand why higher levels of awareness were not reached. Some might also question how generalizable this experience is in other settings. But, it is important to note that their cohort was ethnically diverse, including 8% who spoke only Spanish, and it had an adequate mix of high-risk survivors. Moreover, their findings resonate with what many of us have anecdotally observed in our respective survivorship clinics. Ultimately, the education model from Landier et al can be a catalyst to improving the long-term health care practices for survivors JOURNAL OF CLINICAL ONCOLOGY E D I T O R I A L VOLUME 33 NUMBER 33 NOVEMBER 2