Desmoid Tumor, Quality of Life
Conditions
Keywords
Health-related Quality of Life, Unmet needs, Return to normal life
Brief summary
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.
Interventions
OTHERNo Intervention
Observatory Study
Sponsors
SOS Desmoid e.V.
Universitätsmedizin Mannheim
Technische Universität Dresden
Study design
Observational model
CASE_ONLY
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Desmoid diagnosis (primary neoplasia, all stages) * Age ≥18 years at diagnosis
Exclusion criteria
* Inability to complete a structured questionnaire (insufficient language skills; dementia)
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Health-related Quality of Life (EORTC C30) | baseline | Health-Related Quality of Life Questionnaire |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| The Brief Pain Inventory (BPI) | baseline | 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. |
| Reintegration to Normal Living (RNL) Index | baseline | Reintegration to normal living as a proxy to quality of life |
| Supportive Care Needs Survey | baseline | — |
Countries
Germany
Outcome results
None listed