The REBECCA Need-Finding Online Survey of Breast Cancer Patients and Survivors (EN/SWE)
Authors/Creators
- 1. Karolinksa Institute
Description
This dataset contains the metadata and questionnaire structure for the REBECCA User Requirements Survey, conducted as part of the EU-funded H2020 REBECCA project. The survey aimed to collect information on user needs and requirements from a large number of breast cancer patients and breast cancer survivors, in order to support the design, need-finding and user requirements for the REBECCA system — specifically related to its patient mobile app, companion mobile app (for spouses, friends, etc.), the wearable integration, and the web browser plugin.
The dataset includes the following files:
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REBECCAUserRequirementsSurvey[EN].REDCap.pdf – English version of the survey in PDF format.
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REBECCAUserRequirementsSurvey[EN].REDCap.xml – REDCap XML metadata export (English version), containing the structure and variable definitions of the questionnaire.
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REBECCAUserRequirementsSurvey[SWE].REDCap.pdf – Swedish version of the survey in PDF format.
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REBECCAUserRequirementsSurvey[SWE].REDCap.xml – REDCap XML metadata export (Swedish version), containing the structure and variable definitions of the questionnaire.
The survey collected information in multiple domains, including:
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Demographic and socioeconomic background (age, education, employment, location).
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Medical history related to breast cancer diagnosis and treatment.
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Familiarity and usage patterns of digital technologies, mobile devices, and wearables.
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Social media and online health information-seeking behaviors.
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Attitudes toward privacy, data sharing, and digital health monitoring.
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Preferences regarding feedback, usability, and desired features of the REBECCA system.
The online survey was disseminated through the Amazona Breast Cancer Association (Bröstcancerföreningen Amazona Stockholm) and was answered online in 2021 by approximately 550 breast cancer patients and survivors in Sweden. The data collected helped inform the system design, need-finding process, and user requirements formulation in Work Package 1 of the REBECCA project.
This dataset contains the questionnaire metadata and structure. For data requests, contact: ioannis.ioakimidis (at) ki (dot) se