Medical Assessment of Adverse Health Outcomes in Long-term Survivors of Childhood Cancer

University of Amsterdam, Amsterdamo, North Holland, Netherlands
JAMA The Journal of the American Medical Association (Impact Factor: 35.29). 07/2007; 297(24):2705-15. DOI: 10.1001/jama.297.24.2705
Source: PubMed


Improved survival of children with cancer has been accompanied by multiple treatment-related complications. However, most studies in survivors of childhood cancer focused on only 1 late effect.
To assess the total burden of adverse health outcomes (clinical or subclinical disorders ["adverse events"]) following childhood cancer in a large cohort of childhood cancer survivors with long-term and complete medical follow-up.
Retrospective cohort study of 1362 five-year survivors of childhood cancer treated in a single institution in the Netherlands between 1966 and 1996. All survivors were invited to a late-effects clinic for medical assessment of adverse events. Adverse events occurring before January 2004 were graded for severity in a standardized manner.
Treatment-specific prevalence of adverse events (according to severity) at end of follow-up and relative risk of high or severe burden of disease (> or =2 severe or > or =1 life-threatening or disabling adverse events) associated with various treatments.
Medical follow-up was complete for 94.3% of survivors (median follow-up, 17.0 years). The median attained age at end of follow-up was 24.4 years. Almost 75% of survivors had 1 or more adverse events, and 24.6% had 5 or more adverse events. Furthermore, 40% of survivors had at least 1 severe or life-threatening or disabling adverse event. A high or severe burden of adverse events was observed in 55% of survivors who received radiotherapy only and 15% of survivors treated with chemotherapy only, compared with 25% of survivors who had surgery only (adjusted relative risks, 2.18 [95% confidence interval, 1.62-2.95] and 0.65 [95% confidence interval, 0.46-0.90], respectively). A high or severe burden of adverse events was most often observed in survivors of bone tumors (64%) and least often in survivors of leukemia or Wilms tumor (12% each).
In young adulthood, a substantial proportion of childhood cancer survivors already has a high or severe burden of disease, particularly after radiotherapy. This underscores the need for lifelong risk-stratified medical surveillance of childhood cancer survivors.

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Available from: Richard C Heinen
    • "The goal of the DCOG LATER guideline is to promote uniform and high-quality follow-up care. Unfortunately, about 75% of CCS are confronted with treatment-related health problems (many) years after treatment (called late effects) [18] [19] [20]. "
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    ABSTRACT: Objective: To investigate whether the use of the think-aloud method with propositional analysis could be helpful in the design of a Clinical Decision Support System (CDSS) providing guideline recommendations about long-term follow-up of childhood cancer survivors. Materials and methods: The think-aloud method was used to gain insight into healthcare professionals' information processing while reviewing a paper-based guideline. A total of 13 healthcare professionals (6 physicians and 7 physician assistants) prepared 2 fictitious patient consults using the paper-based guideline. Propositional analysis was used to analyze verbal protocols of the think-aloud sessions. A prototype CDSS was developed and a usability study was performed, again with the think-aloud method. Results: The analysis revealed that the paper-based guideline did not support healthcare practitioners in finding patient-specific recommendations. An information processing model for retrieving recommendations was developed and used as input for the design of a CDSS prototype user interface. Usability analysis of the prototype CDSS showed that the navigational structure of the system fitted well with healthcare practitioners' daily practices. Conclusions: The think-aloud method combined with propositional analysis of healthcare practitioners' verbal utterances while they processed a paper-based guideline was useful in the design of a usable CDSS providing patient-specific guideline recommendations.
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    • "Regrettably, 40% of childhood cancer survivors suffer severe lifethreatening or permanently disabling adverse drug reactions [4]. "
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    • "These mechanisms are used when we perform such activities as purposefully paying attention, planning, organizing, forecasting, strategizing, abstracting, drawing analogies, and trying to overcome routinized behaviors (Bishop et al. 2004; Fernandez-Duque et al. 2000). They also enable us to carry out goal-directed behavior and to reflect on and inhibit inappropriate actions (Geenen et al. 2007; Norman and Shallice 1986; Shallice et al. 1994). "

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