Lynch -Syndrome 144
Conditions
Interventions
Group 1: Observational study
1 arm (no comparison group)
After providing electronic informed consent, participants complete a single anonymous online questionnaire (approx. 20 minutes).
The survey c
Sponsors
Universitätsklinikum Düsseldorf Institut für Medizinische Soziologie Weiterbildungsstudiengang Public Health
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Inclusion criteria
Inclusion criteria: Minimum age 18 years Confirmed diagnosis of Lynch syndrome Informed consent to participate in the study Sufficient command of the German language to independently read and complete the study information, informed consent form, and online questionnaire
Exclusion criteria
Exclusion criteria: Minors (under 18 years of age) Absence of informed consent Insufficient command of the German language to independently participate in the German-language online survey
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Status of medical care – assessed by self-reported information on type of care provider, type of institution, frequency of consultations, and coordination of care Utilisation of recommended cancer screening examinations – assessed by self-reported information on screening procedures performed Assessment instrument: Self-developed anonymous online questionnaire (SociSurvey); single cross-sectional assessment; descriptive-exploratory analysis. | — |
Secondary
| Measure | Time frame |
|---|---|
| Self-reported level of knowledge / Lynch literacy Perceived burden of organising cancer surveillance Impact of Lynch syndrome on life planning and quality of life | — |
Countries
Germany
Contacts
Public ContactRobert Hüneburg
Uniklinikum Bonn
Outcome results
None listed