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After initial treatment for primary breast cancer: information needs, health literacy, and the role of health care workers

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Abstract

Purpose

After a short hospital stay of just some days follows long-term outpatient care for breast cancer patients. The aim of the study is to describe the information needs of breast cancer outpatients and to get in touch with aspects of health literacy, as well as contact various health care workers.

Methods

In a multicenter study, patients were asked about their information needs 10 weeks after surgery. The analysis on hand includes data about 1248 female patients. In addition to descriptive analyses identifying the most prevalent information needs, logistic regression analyses were calculated to identify factors associated with these.

Results

The results show that information needs of breast cancer outpatients are mainly in “follow-up after acute treatment”, “coping with long-term side effects”, and “heredity of breast cancer”. In addition to sociodemographic patient characteristics, perceived helpful contacts with various health care workers as well as a satisfactory patient’s level of health literacy reduced the probability of unmet information needs.

Conclusions

Breast cancer outpatients have numerous information needs. In addition to provide information at the right time regarding a specific disease phase, it is important that health professionals’ support affected breast cancer patients in coping with the new situation.

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Acknowledgments

Research for the study on hand was supported by the German Federal Ministry of Health within the framework of the National Cancer Plan and the research-funding program “Köln Fortune”. Cooperating partners are the German Society of Cancer (Deutsche Krebsgesellschaft), the University of Education Freiburg and the Group Self Help for Women after Cancer (Frauenselbsthilfe nach Krebs). The authors would like to thank all of the patients for their active participation in the study, as well as all of the participating hospitals for their assistance in conducting it. We are also grateful to transcript office cologne for their expert help with the English language and Ines Kneer for her library efforts.

Conflict of interest

The authors declare that they have no competing interests.

Author information

Authors and Affiliations

  1. Institute for Medical Sociology, Health Services Research and Rehabilitation Science (IMVR), Faculty of Human Science and Faculty of Medicine, University of Cologne, Eupener Strasse 129, 50933, Cologne, Germany

    Anna Schmidt, Nicole Ernstmann & Holger Pfaff

  2. German Cancer Society, Kuno-Fischer-Strasse 8, 14057, Berlin, Germany

    Simone Wesselmann & Christoph Kowalski

  3. Institute for Psychology, University of Education, Kunzenweg 21, 79117, Freiburg, Germany

    Markus Wirtz

Authors
  1. Anna Schmidt
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  2. Nicole Ernstmann
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  3. Simone Wesselmann
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  6. Christoph Kowalski
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Correspondence to Anna Schmidt.

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Schmidt, A., Ernstmann, N., Wesselmann, S. et al. After initial treatment for primary breast cancer: information needs, health literacy, and the role of health care workers. Support Care Cancer 24, 563–571 (2016). https://doi.org/10.1007/s00520-015-2814-6

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  • DOI: https://doi.org/10.1007/s00520-015-2814-6

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