Knowledge and Risk Perception of Late Effects Among Childhood Cancer Survivors and Parents Before and After Visiting a Childhood Cancer Survivor Clinic

Abstract

Survivors of childhood cancer are at risk for a variety of treatment-related late effects and require lifelong individualized surveillance for early detection of late effects. This study assessed knowledge and perceptions of late effects risk before and after a survivor clinic visit. Young adult survivors (≥ 16 years) and parents of child survivors (< 16 years) were recruited prior to initial visit to a cancer survivor program. Sixty-five participants completed a baseline survey and 50 completed both a baseline and follow-up survey. Participants were found to have a low perceived likelihood of developing a late effect of cancer therapy and many incorrect perceptions of risk for individual late effects. Low knowledge before clinic (odds ratio = 9.6; 95% confidence interval, 1.7-92.8; P = .02) and low perceived likelihood of developing a late effect (odds ratio = 18.7; 95% confidence interval, 2.7-242.3; P = .01) were found to predict low knowledge of late effect risk at follow-up. This suggests that perceived likelihood of developing a late effect is an important factor in the individuals' ability to learn about their risk and should be addressed before initiation of education.

Survivor care for pediatric cancer survivors

“…Self-management requires advocacy skills in addition to knowledge of the specific late [46][47][48]. In addition, survivor care tools that are useful in assuring success in any model of care include a SCP based on current LTFU guidelines and patient-controlled, portable electronic personal health records (ePHRs) (Fig.…”

Development of a Primary Care-Based Clinic to Support Adults With a History of Childhood Cancer: The Tactic Clinic

“…This type of clinic could help to reinforce addressing risk-based care for adult survivors of childhood cancer as they age, as they are likely to need ongoing reinforcement and assessment. Influencing perception of risk has been noted to be a factor that is associated with follow up knowledge of potential late effects in one study (Cherven et al, 2014). It contributes to a growing literature that reports on strategies that could help support primary care provider capacity to care for this population (Blaauwbroek et al, 2008(Blaauwbroek et al, , 2012Oeffinger et al, 2011), takes into account primary care provider preferences for receiving such support (Nathan et al, 2013) and answers the call for developing and evaluating models of care involving primary care specifically in shared care (Heirs et al, 2013;Oeffinger, 2008;Shad et al, 2012;Singer et al, 2013;Suh et al, 2014).…”

“…The Institute of Medicine issued a report in 2003 on childhood cancer survivorship care, describing the importance of designing minimum standards for comprehensive follow-up care and a recommendation to "…evaluate alternate models of the delivery of this care" (Hewitt et al, 2003). A recurring theme within the literature is the need for a multidisciplinary approach to treatment with an emphasis on proactive care (Oeffinger, 2003), and the need to address communication with primary care providers (Aziz et al, 2006).…”

Treatment, Behavioral, and Psychosocial Components of Cardiovascular Disease Risk Among Survivors of Childhood and Young Adult Cancer

“…Forty‐two percent of participants believed that developing a late effect was not likely or only slightly likely. 103 Oeffinger et al mailed a 1‐page survivorship plan with surveillance recommendations to Hodgkin's lymphoma survivors from the CCSS who had not had a screening echocardiogram for at least 2 years. It was found that reception of the survivorship information did not raise anxiety levels, and 20% of survivors reported undergoing an echocardiogram within 6 months of receiving the survivorship plan.…”