Cooperation network for the provision of local care for patients and families with a genetic tumour risk syndrome
Not Applicable
- Conditions
- Genetic Tumour Risk Syndromes
- Registration Number
- DRKS00026679
- Lead Sponsor
- Medizinische Hochschule Hannover
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Pending
- Sex
- All
- Target Recruitment
- 2000
Inclusion Criteria
1. patients of participating oncology practices
2. written consent to participate in the health services research study
3. age = 18 years
4. have been diagnosed with a tumor disease within 36 months prior to inclusion and have a history of a tumor risk syndrome
Exclusion Criteria
- Patients with a history of hereditary breast and/or ovarian cancer (established treatment pathways already exist).
- Minor patients
- Patients with a history of sporadic tumors
- Privately insured patients (SHI project)
Study & Design
- Study Type
- interventional
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method tilization of human genetic counseling and diagnostics (Comparison of recommendations/referral for genetic counseling by oncologists and genetic counseling actually performed).)
- Secondary Outcome Measures
Name Time Method 1. patient satisfaction with human genetic counseling (VSQ).<br>2. psychological distress / evaluation of factors influencing utilization of telemedical counseling (self-administered questionnaire on factors influencing utilization and experience of genetic counseling, including GCSS, GCOS, MICRA, UTAUT2, etc.).<br>3. utilization of genetic counseling by other family members (analogous to primary endpoint).<br>4. satisfaction of oncologists with structured treatment pathway (qualitative interviews, NASA TLX)<br>5. cost-effectiveness compared to standard care (During the project, a cost-reporting questionnaire will be created to capture direct medical (fees and co-payments, etc.), direct non-medical costs (transportation costs, etc.), and indirect costs (opportunity costs estimated by productivity loss of lost work time). The questionnaire is filled out by the patients).<br><br>