Patients with primary malignant brain tumor of the type high-grade glioma (WHO grade III/VI). Cancer Malignant neoplasm of brain
Conditions
Interventions
Phase I: Participants will be interviewed individually five times over a 12 months period starting at baseline (Test 1: time of diagnosis). Test 2 takes place 5-6 weeks post-operatively, which is appr
Sponsors
Copenhagen University Hospital
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: 1. A diagnosis of HGG (WHO grade III/IV) in persons > 18 years of age, either sex that are capable of speaking and understanding Danish and that have a Karnofsky performance score (KSP) > 60 at baseline 2. Caregivers are eligible if they are named by the patient as the most involved caregiver, and will provide written informed consent 3. Access to the Internet
Exclusion criteria
Exclusion criteria: 1. Karnofsky performance score < 60 at baseline 2. Other types of primary brain tumors than HGG 3. No Internet access 4. No standard treatment
Design outcomes
Secondary
| Measure | Time frame |
|---|---|
| 1. To systematically assess the patients´ needs for rehabilitation along the course of the disease 2. To describe how symptoms are experienced and managed 3. To elucidate the resources of the caregivers and any independent needs related to the patient's disease 4. To gain an understanding of what a survivorship program should comprise 5. To develop a targeted intervention for rehabilitation of patients with HGG and their caregivers 6. Assess safety of the BTW | — |
Primary
| Measure | Time frame |
|---|---|
| The primary aim of phase I is to explore the life situation, needs and experiences across the disease and treatment continuum in patients diagnosed with HGG and their caregivers. The aim of phase II is to study the feasibility of a survivorship program designed from the perspectives in the existing literature and the experiences of the patients and their caregivers obtained in the present study. Data includes: 1. The number of users 2. Logged-in members 3. Postcodes from which the BTW was accessed 4. Types of devices used to access the BTW 5. Number of first time versus returning users 6. Type of activity (number of sessions, most visited pages, use of telephone support) Individual telephone interviews were conducted with the participants by the principal investigator and clinical specialist after three months. Using a semi-structured interview guide, participants were asked to share their experiences and evaluation of the BTW. | — |
Countries
Denmark
Outcome results
None listed