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Introduction: The symptom burden faced by long-term head and neck cancer survivors is not well understood. In addition, the accuracy of clinical data sources for symptom ascertainment is not clear.

Objective: To 1) describe the prevalence of symptoms in 5-year survivors of head and neck cancer, and 2) to evaluate agreement between symptoms obtained via self-report and symptoms obtained from clinical data sources.

Methods: We recruited 5-year survivors of head and neck cancer enrolled at Kaiser Permanente Washington (n = 54). Symptoms were assessed using the MD Anderson Symptom Inventory head and neck cancer module. For each symptom, we assessed the agreement of the patient's survey response ("gold standard") with the 1) medical chart and 2) administrative health care claims data. We computed the sensitivity, specificity, positive predictive value (PPV), and negative predictive value, along with their 95 percent confidence intervals, for each clinical data source.

Results: Eighty percent of patients responded. Nearly all participants (95 percent) reported experiencing at least one symptom from the MDASI-HN, and 93 percent reported two or more symptoms. Among patients reporting a given symptom, there was generally no evidence of the symptom from either clinical data source (i.e., sensitivity was generally no greater than 40 percent). The specificity and PPV of the clinical data sources were generally higher than the sensitivity.

Conclusion: Relying only on medical chart review and/or administrative health data would substantially underestimate symptom burden in long-term head and neck cancer survivors.

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