High-risk adult survivors of childhood cancer frequently do not adhere to recommended medical screening guidelines. Most survivors reported having never discussed heart disease or osteoporosis with their physician. Survivors were most likely to adhere to recommended echocardiogram and bone densitometry screening schedules if they reported more frequent cancer-related visits or were followed up at an oncology clinic, or both. The extent to which our findings reflect the increase in sequelae of treatment, increase in confidence in the knowledge of the specialty provider, familiarity with the facility and its staff in case the treatment was more recent, or more targeted delivery of care, as compared with that available in a non-specialty facility needs further study. Only 7% of the study sample were followed by a cancer specialist; only 4% were followed at a cancer center. Since most survivors are not followed in specialty clinics, this finding is particularly relevant for primary care providers who often lack knowledge about the unique health risks inherent in the treatment for childhood cancer [7
]. Chronic health conditions in childhood cancer survivors become more prevalent with increasing intervals from cancer treatment and are exacerbated by comorbid illnesses associated with aging and maladaptive health behaviors [38
]. Since specific treatment and survivor factors are linked to adverse health outcomes in childhood cancer survivors, informed provider intervention based on risk-stratified medical surveillance represents an important opportunity to reduce cancer-related morbidity.
Pain, fatigue, and perceptions of severity of late effects were strong exogenous variables (unaffected by other variables) in both models. They were antecedent to increased health concerns, more frequent health fears, and a negative affect, which in turn directly and/or indirectly impacted screening frequency. Pain is a frequently reported late effect [39
]; 22.3% of 9034 childhood cancer survivors reported having moderate to very severe pain and 14.3% reported pain sufficient to interfere with daily activities [41
]. Nineteen percent of 2645 [42
], and 30% of 161 adult childhood cancer survivors reported fatigue [43
]. Fatigue and pain negatively impact quality of life [43
] and health behaviors that have the potential to modify late effects [44
More frequent health fears were a deterrent to obtaining echocardiograms; however, more frequent fear also increased health concerns, which predicted more recent follow-up at an oncology clinic. Fear, worry, and anxiety exert both positive and negative influence on health-related behaviors [18
]. Even though early detection through medical screening may positively modify a disease course, the prospect of learning that one has a serious health condition can be profoundly frightening [47
]. Survivors may resort to avoidance behavior [46
] (e.g., not going for routine screens) to reduce fear, anxiety, and a negative affect, or, in contrast, use screening as a means (e.g., negative screening exam) to reduce the discomfort of fear and anxiety [30
Lack of specific information on risk factors and misconceptions can exacerbate fear or contribute to the denial of the existence of significant health problems [49
]. Discussing late effects (heart disease, osteoporosis) with physicians predicted more recent screening in both models. In the general population, specific physician recommendation is associated with a higher rate of screening for cervical [52
], breast [53
], prostate [54
], colorectal [55
], and skin cancers [58
]. More recent oncology clinic follow-up was predicted by survivors' receipt of an individualized print media intervention that detailed treatment exposure risks for bone density-related late effects and recommendations for follow-up. The impact of the print media intervention on the bone density risk group may reflect the fact that a larger proportion of this group received the intervention; additionally this group may have had greater sensitivity or receptivity because of discernible symptoms (e.g, pain, physical dysfunction).
Motivation played a prominent role in all the models. Extrinsically motivated individuals are more worried and fearful about their health, think they are less able to exert control over health matters, and are more likely to rely on health professionals for direction [17
]; intrinsically motivated individuals are more self-reliant and self-directed instead of being physician-directed [17
] in their health care choices. Because they may not have accurate health and risk information and have infrequent contact with a physician, intrinsically motivated survivors may be at greater risk for not adhering to screening guidelines. The complex interactions among fear, the patient-physician relationship, affect, and intrinsic motivation should be further explored.
The unique contributions of baseline exercise frequency and sedentary lifestyle to the echocardiogram model may reflect survivors who have early symptoms of treatment-related cardiac sequelae [45
]; similarly, survivors with a low BMI were more likely to adhere to bone densitometry recommendations.
The study sample reflects a subset of the overall CCSS population - those who responded to the Health Care Needs and CCSS Follow-up 2 Surveys; therefore, survivors included in the current analysis may not be fully representative of the population from which they were derived. The information utilized to classify the health screening outcomes, as well as the independent measures, was based upon self-reported data. Lastly, while the CCSS population represents a large and heterogeneous cohort of five year survivors, results may not be generalizable to all childhood cancer survivors. As a group, CCSS participants may be more informed regarding risks and health promotion because of newsletters received as part of participation in the study.
Primary care physicians are encouraged to specifically inquire about treatment-related symptoms, particularly pain, fatigue, and anxiety [1
]. These symptoms may share common biological mechanisms [62
] and, until addressed, obstruct positive health behaviors. Physicians should elicit survivors' concerns and address any misconceptions that may contribute to survivors' lack of understanding about the significance of their late effects risks. Therapeutically increasing or decreasing fear arousal [65
] by providing personalized information on late effects risks and the benefits of medical screening may enhance screening behavior. Focused interactions with survivors are important to reduce anxiety, support motivation, and contribute to a more positive affect, which in turn support adherence to screening.