Data PROM Baseline
Description
The data include the first assessment (before the initial treatment) of patient-reported outcomes (PROs) in ambulatory patients who visited the breast cancer center at Charité – Universitätsmedizin Berlin between November 2016 and March 2021. 1727 ambulatory patients with early breast cancer, ductal carcinoma in situ (DCIS), fibroadenoma, and other breast diseases were registered in the digital PRO-system as part of clinical routine. Patients’ sociodemographic data, medical history, clinical variables, and scores of the EORTC QLQ-C30 and EORTC QLQ-BR23 are provided in this dataset. The assessment was performed electronically on tablet computers in the waiting area of the outpatient clinic. All surveys were provided in German via a web-based PRO-system (Heartbeat Medical). The questionnaires included PROs (EORTC QLQ-C30 and EORTC QLQ-BR23) and anamnesis (medical history and sociodemographic data). The anamnestic dataset, which was obtained via questionnaire, includes a version of the ICHOM breast cancer standard set that has been modified to German standards by the study group. Additional clinical data were documented afterwards in the PRO system by doctoral students or student assistants based on medical files. The inclusion criteria for this dataset were as follows: - Patients with a diagnosis of breast cancer, DCIS, fibroadenoma, or other breast diseases - Age 18 or over - German speakers The exclusion criteria were as follows: - Non-eligible diagnosis - Diagnosis date after March 31, 2021 - Missing diagnosis or diagnosis date - Diagnosis changed into a non-eligible diagnosis type (e.g., diagnosis date > 7 days after initial survey - First survey after treatment initiation - Second opinion Most of the patients did not know their definitive diagnosis before the assessment of PROs and before the start of their initial treatment. If patients were diagnosed with more than one breast disease, they were labeled according to the following algorithm: breast cancer/DCIS>fibroadenoma>other breast diseases. Patients who were not treated at the Charité and only visited the outpatient clinic for a second were excluded. Version 3: Cognitive function score in EORTC QLQ-C30 was updated. Version 4: Codebook is updated for the definition of BR-30 (brst and bras)