Clinical trial · Observational
Long Term Survivors of High-grade Glioma and Their Caregivers
Long-term Survivors of High-grade Glioma
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Summary
Brief summary (as posted)
This study builds on the limited body of existing literature combined with the results from the investigators' previous research conducted with 30 newly diagnosed patients with high-grade glioma (HGG) and 33 of their caregivers. This research established an overview of the daily life experiences when diagnosed with a HGG or being a caregiver. Descriptions of needs and preferences from time of diagnosis to one year exist. However, such data are still lacking the representation from long-term survivors (LTS) and their caregivers. This mixed methods study aims to address perspectives on daily life experiences of long-term survivors with HGG and their caregivers as well as the needs and preferences for support, rehabilitation and palliation. Separate telephone interviews with patients and their caregivers and self-reported questionnaires for patients will be conducted. The mixed methods design is a convergent sequential design using an identical sampling.
Conditions
Conditions (4)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| Brain Diseases | — | UNRESOLVED | — |
| Depression | — | UNRESOLVED | — |
| Physical Impairment | — | UNRESOLVED | — |
| Quality of Life | — | UNRESOLVED | — |
Interventions
Interventions (1)
| Intervention | Type | Mapped drug | Match |
|---|---|---|---|
| no treatment | Other | — | UNRESOLVED |
Design
Arms and outcomes
Arms (1)
- label
- HGG patients
- description
- single-group study- long term survivors
- interventionNames
- Other: no treatment
Primary outcomes (1)
- measure
- Number of Participants Identifying With the Three Main Themes Identified
- timeFrame
- up to 5 months
- description
- Interviews seek to explore the perspectives on the life situation and quality of life Analysis of the interviews identified three main themes, shared by all the patients : (1) Searching for meaningful activities. (2) Selecting information that enhances self-management strategies. (3) Protection for safety reasons.
Secondary outcomes (4)
- measure
- The Hospital Anxiety and Depression Scale (HADS)
- timeFrame
- Baseline
Eligibility
Eligibility (as posted)
- Sex
- All
- Minimum age
- 18 Years
Show eligibility criteria text
Inclusion Criteria: * Participants ≥18 years of age, with the ability to speak and understand Danish. Caregivers are eligible if they are named by the patient as being one of the closest relative(s) providing care at home on a regular basis. Exclusion Criteria: * not able to speak and understand Danish * not able to participate in being interviewed
References
Publications (1)
- DERIVEDPiil K, Christensen IJ, Grunnet K, Poulsen HS. Health-related quality of life and caregiver perspectives in glioblastoma survivors: a mixed-methods study. BMJ Support Palliat Care. 2022 Dec;12(e6):e846-e854. doi: 10.1136/bmjspcare-2019-001777. Epub 2019 Jun 28. PMID 31253732