Journal
EUROPEAN JOURNAL OF CANCER CARE
Volume 27, Issue 2, Pages -Publisher
WILEY
DOI: 10.1111/ecc.12806
Keywords
high-grade glioma; needs; preferences; quality of life; supportive care
Funding
- Center for Integrated Rehabilitation of Cancer Patients CIRE
- Danish Cancer Society
- Novo Nordisk Foundation
- Neuro Centre at the University Hospital of Copenhagen
- Novo Nordisk Foundation for Clinical Nursing Research
- Capital Regional Research Foundation in Denmark
- Torben and Alice Frimodts Foundation
- Vera and Flemming Westerbergs Foundation
- Hetland Olsen's Foundation
- Research Foundation at the University Hospital of Copenhagen
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Previous reports on the patient perspective of daily life during a 1-year high-grade glioma (HGG) trajectory from the time of diagnosis are sparse. The aim of this longitudinal mixed methods study is to identify the specific needs and preferences for rehabilitation and supportive care and how it links with physical activity, psychological measures and health quality longitudinally over the first year after diagnosis among patients with HGG and their caregivers by integrating qualitative and quantitative findings. Using a longitudinal mixed methods design, patients with malignant glioma (n=30) and their caregivers (n=33) were interviewed and completed questionnaires (patients only) about physical activity level, anxiety/depression and quality of life five times during the 1-year period. Their needs and preferences included interventions designed to re-define hope after diagnosis, health promoting physical activities initiated early, psychological symptom management strategies, and life planning. Caregivers are committed to their caregiving role, but their engagement is nonetheless challenged over time by enormous caregiver burdens. The identified specific needs and preferences favour supportive care, education, information and rehabilitation. Guidelines attentive to these needs and implemented in clinical practice have the potential to improve patients' health-related quality of life and support caregivers by involving them more actively in care and management.
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