The main aim of the study is to assess the situation and quality of life of desmoid patients. Impaired areas of quality of life and the associated factors are to be identified. The survey is planned as a cross-sectional study (patient survey). Prevalent and incident desmoid patients will be identified at the University Hospital Mannheim and checked for eligibility. Quality of life and patient-reported data are collected by means of written questionnaires. Medical data is collected from patient files in the clinics. The aim is to include 100 patients. Descriptive analyses of the variables collected and regression models are planned as statistical analysis.
Study Type
OBSERVATIONAL
Enrollment
100
Observatory Study
Universitätsklinikum Carl-Gustav-Carus Dresden
Dresden, Saxony, Germany
Health-related Quality of Life (EORTC C30)
Health-Related Quality of Life Questionnaire
Time frame: baseline
The Brief Pain Inventory (BPI)
The BPI scale defines pain as follows: Worst Pain Score: 1 - 4 = Mild Pain. Worst Pain Score: 5 - 6 = Moderate Pain. Worst Pain Score: 7 - 10 = Severe Pain.
Time frame: baseline
Reintegration to Normal Living (RNL) Index
Reintegration to normal living as a proxy to quality of life
Time frame: baseline
Supportive Care Needs Survey
Time frame: baseline
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