Population-based cancer registries for quality-of-life research

A work-in-progress resource for survivorship studies?

Authors

  • Melissa S. Y. Thong PhD,

    Corresponding author
    1. Center of Research on Psychology in Somatic Diseases (CoRPS) Tilburg University, Tilburg, the Netherlands
    2. Comprehensive Cancer Center South (CCCS), Eindhoven Cancer Registry, Eindhoven, the Netherlands
    • Corresponding author: Melissa S. Y. Thong, PhD, CoRPS, PO Box 90153, 5000 LE, Tilburg, The Netherlands; Fax: (011) 31 13 466 2067; m.thong@tilburguniversity.edu

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  • Floortje Mols PhD,

    1. Center of Research on Psychology in Somatic Diseases (CoRPS) Tilburg University, Tilburg, the Netherlands
    2. Comprehensive Cancer Center South (CCCS), Eindhoven Cancer Registry, Eindhoven, the Netherlands
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  • Kevin D. Stein PhD,

    1. Behavioral Research Center, American Cancer Society, Atlanta, Georgia
    2. Rollins School of Public Health, Emory University, Atlanta, Georgia
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  • Tenbroeck Smith MA,

    1. Behavioral Research Center, American Cancer Society, Atlanta, Georgia
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  • Jan-Willem W. Coebergh MD, PhD,

    1. Comprehensive Cancer Center South (CCCS), Eindhoven Cancer Registry, Eindhoven, the Netherlands
    2. Department of Public Health, Erasmus University Medical Center, Rotterdam, the Netherlands
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  • Lonneke V. van de Poll-Franse PhD

    1. Center of Research on Psychology in Somatic Diseases (CoRPS) Tilburg University, Tilburg, the Netherlands
    2. Comprehensive Cancer Center South (CCCS), Eindhoven Cancer Registry, Eindhoven, the Netherlands
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  • European-American Dialogues on Cancer Survivorship: Current Perspectives and Emerging Issues

  • This supplement was guest edited by Vittorio Mattioli, MD (NCRC, Bari, Italy) and Kevin Stein, PhD (American Cancer Society, Atlanta, Georgia) and was produced with the authoritative contribution of 58 authors from the European Union and the United States. The primary aims are to highlight the potential differences between European and American approaches to cancer survivors' issues, increase coordination among oncologists and other primary care providers, and aid the development of a shared care model that can improve the quality of cancer care.

  • The opinions or views expressed in this supplement are those of the authors and do not necessarily reflect the opinions or recommendations of the journal editors, the American Cancer Society, John Wiley & Sons, Inc., or the National Cancer Research Center Istituto Tumori “Giovanni Paolo II” Bari.

    We thank the participants of the Eurocourse WP6 Quality of Life workgroup for their contribution: Volker Arndt, Annemarie Bouvier, Valerie Jooste, Linda Sharp, and Penny Wright.

Abstract

BACKGROUND

With the increasing number and diversity of cancer survivors, studies of survivors' physical, emotional, and social health and well being are of growing importance. Population-based cancer registries, which collect data on incident cases, can play an important role in quality-of-life (QoL) studies. In this review, the authors provide an overview of QoL studies that have used cancer registry data in this emerging area of research.

METHODS

Publication databases were searched for relevant peer-reviewed original articles published between 2001 and mid-2011. Inclusion criteria were articles published in English that used cancer registries as the sampling frame and/or that used registry data in analyses with QoL data. All included articles were assessed on the quality of information provided, cancer registry procedures, and study design.

RESULTS

In total, 173 articles from 13 countries were reviewed, and a large proportion were from the United States (n = 72) and Europe (n = 70). Fourteen different malignancies were studied, and the most frequent were breast cancer. Most studies focused on adult survivors, and only 4 focused on the elderly (aged >70 years). Of the reviewed articles, 110 (64%) provided a good amount of information on the cancer registry. Information less frequently reported included mainly follow-up of vital status and characteristics of respondents/nonrespondents.

CONCLUSIONS

QoL studies increasingly use population-based registries, which provide important clinical variables and an excellent sampling frame for identifying subgroups. Until now, most studies have tended to focus on more prevalent cancers, and surprisingly few studies have focused on QoL of elderly survivors, who remain understudied in clinical trials. Cancer 2013;119(11 suppl):2109-23. © 2013 American Cancer Society.

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