Patients with soft-tissue tumors ORPHA:873 Desmoid tumor D48.1
Conditions
Interventions
Group 1: Patients with intermediate soft-tissue tumors (desmoid fibromatosis)
Group 2: Patients with benign soft-tissue tumors
Group 3: Patients with malignant soft-tissue tumors
Sponsors
Heinrich-Heine Universität Düsseldorf Klinische Psychologie Institut für Experimentelle Psychologie
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Inclusion criteria
Inclusion criteria: -Patients who have/had any kind of benign, intermediate or malignant soft-tissue tumor -sufficient in English -sufficient in handling a smartphone, tablet or computer -stable internet connection
Exclusion criteria
Exclusion criteria: -younger than 18 years -patients who were diagnosed with several tumors such as a malignant and benign or indermediate tumor -patients who were diagnosed with a mental disorder prior to the oncological diagnosis
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Differences between benign, intermediate and malignant soft-tissue tumor patients with regard to patients´ mental health and coping with the disease. The survey measures stress coping using the Brief COPE, depression using the Patient Health Questionnaire (PHQ-9), quality of life using the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30), resilience using the Brief Resilience Scale (BRS), emotionality using the Positive and Negative Affect Schedule (PANAS), need for psychosocial support using the Hornheider Screening Instrument (HSI), suffering using the Suffering Assessment Questionnaire (SAQ), fear of progression using the Fear of Progression Questionnaire (FOP) and psychological strain using the Kessler Psychological Distress Scale (K10). | — |
Secondary
| Measure | Time frame |
|---|---|
| Disease specific questions and questions about the medical and psychosocial support are supposed to shed light on whether the emotional strain in soft-tissue tumor patients is only determined by malignancy or if aspects such as uncertainty and inexperience with rare diseases have an influence too. | — |
Countries
Germany
Contacts
Public ContactJennifer Schuffelen
Heinrich-Heine Universität Düsseldorf Klinische Universität Institut für Experimentelle Psychologie
Outcome results
None listed