ArticleEGEMS (Washington, DC)2019
Symptom Burden in Long-Term Survivors of Head and Neck Cancer: Patient-Reported Versus Clinical Data.
Article in EGEMS (Washington, DC), 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
2 citing papers in PubMed, 5 citations in OpenAlex.
- Long-term outcomes among individuals living with and beyond head and neck cancer: a scoping review.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Article
- Article
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Authors and funding
7 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionThe 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.
objectiveTo 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.
methodsWe 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.
resultsEighty 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.
conclusionRelying 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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