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Follow-Up Survey of Breast Cancer Patients 12 Months after Primary Breast Cancer Surgery

Project director

Prof. Dr. Holger Pfaff


Dr. Antje Dresen (Head of the Department of Medical Sociology)
Dr. Susan Lee (operational project management)
Markus Alich (administrative project management)
Natalia Cecon (PhD student)

Project duration

02/2018 - 01/2019

Project description


Due to higher survival rates and the further development of therapeutic options in oncology, breast cancer patients can return to their old lives earlier. Today, however, oncological diseases are largely presented as chronic diseases, and patient reported outcomes (PRO) are therefore given a central position in patient surveys. The measurement of PRO is important during and after treatment to assess patients' experiences and opinions in this context. The importance of PRO and quality of life after cancer underscore the relevance of this project.

Research Aim

The aim of the project is to gain knowledge about PRO in breast cancer patients 12 months after breast surgery. Patients who took part in the patient survey of the NRW Breast Centers are interviewed again 12 months after the operation by the Institute for Medical Sociology, Care Research and Rehabilitation Science (IMVR). This quantitative, postal survey is intended to assess the patients' state of health, information needs and PRO. Based on the collected data, information can be derived regarding the physical and psychological quality of life and about the subjective state of health 12 months after the operation. Furthermore, the research group hopes to use the study design to generate comparative data between the first (post-stationary) and second waves of the survey (12 months after the operation) in order to be able to analyze changes over time.


Informed consent to participate in the follow-up survey was collected together with the consent to the annual patient survey in the NRW breast centers. If the patient agreed to participate in the follow-up study, a standardized questionnaire with an addressed and stamped envelope was sent to the patients 12 months after the operation, with the request to complete the questionnaire within the next two weeks and send it back to the IMVR. In order to be able to link the follow-up data with the first patient survey data, the patients received an identification number, which is provided on the questionnaire. As with the routine patient survey in the NRW breast centers, the survey is based on Dillman’s Total Design Method. The data is then documented, tested for quality assurance, and evaluated at IMVR,.


The directors of the operational sites of the breast centers will receive the results of the data in the form of a report. The results can be used from the clinical perspective of breast centers to monitor treatment success and symptoms over time in order to improve the quality of care for breast cancer patients who have undergone surgery in a NRW breast center.