Care coordination for patients with rare cancers Not Applicable
Conditions
Interventions
TARGET (intervention, post phase)
The new care model "TARGET" includes mainly digital interventions to optimise trans-sectoral cooperation and sustainably improve the medical care of the target popula
Sponsors
German Aerospace Center
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: 1. Patients with rare cancers (suspected rare cancer, an initial diagnosis of rare cancer, an advanced rare cancer) 2. Aged 18 years and over 3. Legally insured with AOK Bayern (a German health insurance company) 4. Able to give informed consent 5. Able to use a smartphone or tablet 6. Life expectancy > 3 months
Exclusion criteria
Exclusion criteria: 1. Patients with uncontrolled co-morbidities 2. Common cancers with a typical course 3. Insufficient knowledge of German to take part in the surveys via the app 4. Not insured with AOK Bayern
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Coordination of care from the patient's perspective measured using the German version of the Care Coordination Instrument (CCI-D), a questionnaire for cancer patients (29 items, each 4-point Likert scales, from strong to no agreement) via the patient app one month (T1) and six months (T3) after inclusion | — |
Secondary
| Measure | Time frame |
|---|---|
| Patient-reported outcomes 1. Health-related quality of life (HRQoL), functionality, condition and symptoms measured using the German version of the EORTC QLQ-C30 patient-reported outcomes (PROs) (30 items, each with 4 or 7-point Likert scales) undertaken at weekly intervals after screening upon inclusion (T0) via the patient app. The entire questionnaire is used at T0 and T3, additionally the functional scales at T2 and individual items on symptom distress weekly up to T3. 2. Health literacy measured using the German version of the Functional Communicative Critical Health Literacy (FCCHL) questionnaire (14 items, 4-point Likert scales) at T1 Clinical parameters 3. Clinical parameters measured using the project-specific case file at baseline and 3, 6 and 16 months after inclusion (T0, T2, T3, T4) 4. Progression-free survival (PFS; length of time from the start of therapy until disease progression or death, regardless of the cause of death) measured using doctor's documentation in the project-specific case file at 3, 6 and 16 months after inclusion (T2, T3, T4) 5. Overall survival (OS; time to an event from study entry) measured using doctor's documentation in the project-specific case file. The follow-up is 16 months after inclusion (until T4). 6. Course of therapy: Percentage of curative / palliative approaches, type of therapy (including surgery, chemotherapy, radiotherapy, individualised therapy), percentage of patients with advanced cancer with standard therapy, number of therapy lines measured using doctor's documentation in the project-specific case file. The follow-up is 12 months after inclusion (until T4). 7. Time to diagnosis (if a diagnosis has already been made) measured using doctor's documentation in the project-specific case file at baseline (T0), otherwise 3 months (T2) after inclusion. 8. Molecular diagnosis has taken place, whether the patient has been presented to a molecular tumour board and whether this has resulted in a therapeutic, measured us | — |
Countries
Germany
Contacts
Public ContactJulia Lühnen
Outcome results
None listed