Continued inadequacies in data sources for the evaluation of cancer services

Smith, Sarah; Muir, K. R.; Wolstenholme, Jane; Thornhill, Kate; Zamorski, A.; Tolley, K; Logan, R. F. A.; Chilvers, C. E. D.

doi:10.1038/bjc.1997.21

Cited by 8 publications

(2 citation statements)

References 5 publications

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“…Cancer registries are the primary source of surveillance data for cancer incidence, yet several studies have shown that the completeness and accuracy of cancer registries data varies (Rushton & Romaniuk, 1997; Smith et al , 1997; Cartwright, 1999; Bullard et al, 2000). Our study emphasizes the imperfections in both registers of completeness, case ascertainment, timeliness and diagnostic accuracy.…”

Section: Discussionmentioning

confidence: 99%

Comparison of a specialist haematological malignancy database against a regional cancer registry: case ascertainment and diagnostic accuracy

et al. 2002

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Summary. No large-scale study has been performed to assess the problem of registering all subtypes of haematological malignancies. We compared registration of haematological malignancies between 1994 and 1996 by haematologists in 14 National Health Service Trusts in the Eastern part of the South Thames Region with data for the same area recorded by the Thames Cancer Registry (TCR). Case ascertainment and diagnostic accuracy were the two main outcome measures. A combined total of 4714 haematological malignancies were recorded over the 3-year period. Of these, 1329 (28%) were common to both databases, 1975 (42%) were recorded only by the TCR and 1410 (30%) were recorded only by the haematologists. Nearly one-third (31%) of all cases recorded by the TCR were death certificate-only registrations. The TCR records were obtained from 30 clinical specialities. Haematology only accounted for 35% of these cases. Discordant diagnoses were recorded in 20% of the cases that were recorded in both databases. Our data suggests that both registers have deficiencies in collecting and validating data on the incidence of haematological malignancies. To address this, a partnership was established in 1998 between haematologists in the South Thames Region and the Thames Cancer Registry. It is anticipated that engaging clinicians in the collection and validation of data will enhance the completeness of case ascertainment and improve the quality of data on haematological malignancies.

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Section: Discussionmentioning

confidence: 99%

Comparison of a specialist haematological malignancy database against a regional cancer registry: case ascertainment and diagnostic accuracy

et al. 2002

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“…Et slikt system med tett kontakt mellom sykehus og Kreftregisteret har ikke bare rasjonalisering som hensikt, men kvalitetssikring. Erfarin-ger fra Norge og andre land viser at det er meget vanskelig å få komplette data av høy kvalitet både om primaerdiagnosen og om tilbakefall uten meget sterk lokal medvirkning (18). Den ekstra ressursinnsatsen som her skytes inn, vil gi en stor kvalitetsforbedring av registerdatabasen, som igjen vil gi grunnlaget for meningsfylt kvalitetssikring og -kontroll av kreftbehandlingen.…”

Section: B) Samkjøring Med Andre Registre For å Oppnå Kompletthet Og unclassified

Kreftregisteret – fra registrering av kreftinsidens og overlevelse til populasjonsbasert klinisk epidemiologi

Langmark¹,

Norstein²

2009

Nor J Epidemiol

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Tumor, Host, and Environment‐related Prognostic Factors

2003

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In the current climate of knowledge in oncology, an understanding of factors that govern outcome in cancer patients is essential to achieve the maximum therapeutic benefit. Discipline in the approach to patient management allows the most advantageous application of current evidence and leads to best practice. To determine prognosis it is helpful to consider tumor‐related prognostic factors that characterize the disease, host‐related prognostic factors that typify the patient, and environment‐related factors, which are external factors not directly related to either the disease or the patient. In this chapter, we review the most common factors in each of these categories. The discussion will focus on prognostic factors that are relevant at the time of diagnosis and initial treatment. However we caution that, in the management of a cancer patient, determination of prognosis could be required repeatedly to take account of multiple episodes throughout the course of the disease. Frequently these situations reflect decision‐making points (e.g., concerning adjuvant therapy, management of recurrent cancer, and palliative or terminal care). The diversity and impact of prognostic factors in each category will be demonstrated using examples from the recent literature. A comprehensive review of prognostic factors in distinct cancers follows in Part B of the book. Most cancer literature equates prognosis with tumor characteristics. Cancer pathology and anatomic disease extent account for most variations in cancer outcome. Since screening and early detection allow for diagnosis of small localized cancers, however, environmental factors are likely to have a more pronounced impact on outcome. This is particularly so as treatment becomes more effective. In addition, these factors are easier to influence by applying currently existing knowledge compared to those factors at the host or tumor level that are ingrained permanently in the phenotype of the case. The environmental factors are also the least studied despite evidence that they may have profound impact on outcome. For example, we reviewed Medline ® publications between December 1, 1998 and November 30, 1999 under the search terms “prognostic factors in cancer” and “human” and “English language.” This revealed 21 of 983 papers on prognostic factors in cancer dealing with environment‐related factors, as indicated by their titles. In contrast, the same search yielded 189 publications with titles focusing on genetic or molecular prognostic factors. It would seem from this initial and potentially superficial examination that a disproportionate neglect of prognostic factors other than those related to the tumor might exist. This warrants further evaluation, since it is possible that an alternative situation is that the nontumor factors are either too few in number, not relevant to patient outcome, or will soon be surpassed by an overwhelming influence of new factors that are being detected with modern techniques. We believe that the latter is unlikely in the foreseeable future and that all of these factors are highly relevant to the task of uncovering prognosis in cancer.

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Continued inadequacies in data sources for the evaluation of cancer services

Cited by 8 publications

References 5 publications

Comparison of a specialist haematological malignancy database against a regional cancer registry: case ascertainment and diagnostic accuracy

Comparison of a specialist haematological malignancy database against a regional cancer registry: case ascertainment and diagnostic accuracy

Kreftregisteret – fra registrering av kreftinsidens og overlevelse til populasjonsbasert klinisk epidemiologi

Tumor, Host, and Environment‐related Prognostic Factors

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